Breakthrough Gene Therapy For Butterfly Children’s DiseaseApril 30, 2025 In a landmark development for rare disease treatment, the U.S. Food and Drug Administration (FDA) has approved ZEVASKYN, the first autologous, cell-based gene therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB), a devastating skin condition often called "Butterfly Children's Disease." The approval marks a pivotal moment not only for the half-million people worldwide living with this rare condition but also demonstrates the power of an innovative venture philanthropy model that's reshaping how rare disease research is funded. |
Heartfelt Documentary Matter of Time Set to Premiere at the 2025 Tribeca FestivalApril 17, 2025 Matter of Time, a compelling documentary following Eddie Vedder and a passionate community uniting to cure a rare disease, will have its world premiere at the 24th Tribeca Festival on Thursday, June 12th. The film captures the electrifying energy of Vedder’s October 2023 solo concerts in Seattle, organized to raise critical funds for clinical research for Epidermolysis Bullosa (EB) - a rare and debilitating genetic skin disorder that mostly affects children, causing fragile, blistering skin. All proceeds from these concerts went directly to EB Research Partnership (EBRP), the world’s largest organization funding research for EB, with the ambitious goal of finding a cure by 2030. |
FIRST EVER TOPICAL GENE THERAPY APPROVED FOR “BUTTERFLY DISEASE” CHILDRENMay 24, 2023 Patient advocates have spent years raising awareness and funds for research through work with the non-profit EB Research Partnership (EBRP), and its unique Venture Philanthropy model. EBRP leverages concepts from principal investing and applies them towards achieving patient-oriented goals. EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track both potential cures for EB as well as therapies that could affect thousands of other rare diseases. EBRP has been able to generate a more than double return on its investment and reinvest that capital back into more EB projects. |
A Rare Disease Patient Registry
|
Recent Press
9-Year-Old Girl with Devastating Skin Disorder Lives in Pain: 'I Can't Play on the Playground'
June 12, 2025
Tayma struggles with the most severe version of Epidermolysis Bullosa, also known as butterfly disease, a rare disorder that causes skin to blister and crack
Tayma struggles with the most severe version of Epidermolysis Bullosa, also known as butterfly disease, a rare disorder that causes skin to blister and crack
Eddie Vedder Amplifies Fight Against Childrens Butterfly Disease
June 10, 2025
Pearl Jam’s frontman turns his platform into a powerful force for epidermolysis bullosa research, just as breakthrough gene therapies offer unprecedented hope.
Pearl Jam’s frontman turns his platform into a powerful force for epidermolysis bullosa research, just as breakthrough gene therapies offer unprecedented hope.
Eddie Vedder Raises Awareness for Rare Disease in New Docu Clip
June 9, 2025
The closer you get to this community and the more you understand it, you cannot escape how difficult the challenges are for these families," Pearl Jam singer says in exclusive clip from Matter of Time
The closer you get to this community and the more you understand it, you cannot escape how difficult the challenges are for these families," Pearl Jam singer says in exclusive clip from Matter of Time
Memorial walk and butterfly bench dedicated to Elliana Rose Campbell: 'I want to feel as close to her as I can'
May 25, 2025
Shortly after Elliana Rose Campbell was born on May 23, 2024, her parents say she was diagnosed with what's been called the worst disease you've never heard of. Epidermolysis Bullosa (EB), is a rare skin disease with no known cure.
Shortly after Elliana Rose Campbell was born on May 23, 2024, her parents say she was diagnosed with what's been called the worst disease you've never heard of. Epidermolysis Bullosa (EB), is a rare skin disease with no known cure.
Memorial walk held for Brewer baby who died from rare skin disease
May 24, 2025
BANGOR — Mainers and social media followers around the globe are rallying behind a Brewer family mourning the death of their 10-month-old baby, Elliana Rose Campbell, who died of a rare skin disease in April.
BANGOR — Mainers and social media followers around the globe are rallying behind a Brewer family mourning the death of their 10-month-old baby, Elliana Rose Campbell, who died of a rare skin disease in April.
Pearl Jam’s Eddie Vedder performs for a purpose in ‘Matter of Time’ trailer: EXCLUSIVE
May 13, 2025
When Eddie Vedder took the stage in 2023 for a series of concerts in Seattle, he did it for a good cause. The Pearl Jam frontman’s shows were organized to raise funds for clinical research for epidermolysis bullosa — they were also recorded for a new documentary, “Matter of Time.”
When Eddie Vedder took the stage in 2023 for a series of concerts in Seattle, he did it for a good cause. The Pearl Jam frontman’s shows were organized to raise funds for clinical research for epidermolysis bullosa — they were also recorded for a new documentary, “Matter of Time.”
Eddie Vedder Partners with Fandiem for ‘Matter of Time’ World Premiere Flyaway Sweepstakes
May 5, 2025
On June 12, New York’s Tribeca Festival will host the world premiere of Matter of Time, a new documentary focused on Eddie Vedder and his efforts to raise awareness and funds towards a cure for Epidermolysis Bullosa. Centered in the Pearl Jam frontman’s two sold-out hometown solo shows at Seattle’s Benaroya Hall, which donated all proceeds towards vital ongoing research, the film weaves together concert footage and stories from doctors, researchers, parents and young people affected by the rare skin disorder for a revealing view of the purpose-driven artist and the cause that needed a champion.
On June 12, New York’s Tribeca Festival will host the world premiere of Matter of Time, a new documentary focused on Eddie Vedder and his efforts to raise awareness and funds towards a cure for Epidermolysis Bullosa. Centered in the Pearl Jam frontman’s two sold-out hometown solo shows at Seattle’s Benaroya Hall, which donated all proceeds towards vital ongoing research, the film weaves together concert footage and stories from doctors, researchers, parents and young people affected by the rare skin disorder for a revealing view of the purpose-driven artist and the cause that needed a champion.
Grateful for Graham 5K Run, Walk Raises Funds for Rare Genetic Disorder
May 3, 2025
Hundreds of people gathered in New Hartford Saturday morning for the fourth Annual Grateful for Graham 5K Run and Walk. The event took place along the Rayhill Memorial Trail located near the BOCES on Middle Settlement Road. Participants included a wide variety of runners and walkers. They were there to support Graham Robertello, a five-year-old boy who was born with a rare genetic disorder called epidermolysis bullosa or EB. The rare condition causes his skin to blister or sheer off at the slightest touch.
Hundreds of people gathered in New Hartford Saturday morning for the fourth Annual Grateful for Graham 5K Run and Walk. The event took place along the Rayhill Memorial Trail located near the BOCES on Middle Settlement Road. Participants included a wide variety of runners and walkers. They were there to support Graham Robertello, a five-year-old boy who was born with a rare genetic disorder called epidermolysis bullosa or EB. The rare condition causes his skin to blister or sheer off at the slightest touch.
U.S. FDA Approves ZEVASKYN™ (prademagene zamikeracel), the First and Only Cell-Based Gene Therapy for Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB)
April 29, 2025
Abeona Therapeutics Inc. (Nasdaq: ABEO) today announced the U.S. Food and Drug Administration (FDA) has approved ZEVASKYN™ (pronounced as ‘ZEE-vah-skin’) (prademagene zamikeracel) gene-modified cellular sheets, also known as pz-cel, as the first and only autologous cell-based gene therapy for the treatment of wounds in adult and pediatric patients with recessive dystrophic epidermolysis bullosa (RDEB), a serious and debilitating genetic skin disease. There is no cure for RDEB and ZEVASKYN is the only FDA-approved product to treat RDEB wounds with a single application.
Abeona Therapeutics Inc. (Nasdaq: ABEO) today announced the U.S. Food and Drug Administration (FDA) has approved ZEVASKYN™ (pronounced as ‘ZEE-vah-skin’) (prademagene zamikeracel) gene-modified cellular sheets, also known as pz-cel, as the first and only autologous cell-based gene therapy for the treatment of wounds in adult and pediatric patients with recessive dystrophic epidermolysis bullosa (RDEB), a serious and debilitating genetic skin disease. There is no cure for RDEB and ZEVASKYN is the only FDA-approved product to treat RDEB wounds with a single application.
Historic achievement: FDA approval of Abeona Therapeutics' ZEVASKYN
April 29, 2025
EB Research Partnership ("EBRP") invested in the work that led to ZEVASKYN at Stanford University under their pioneering Venture Philanthropy Model. This approval marks a historic moment for the EB community as the third FDA approved treatment and the first autologous, cell-based gene therapy for RDEB (Recessive Dystrophic Epidermolysis Bullosa).
EB Research Partnership ("EBRP") invested in the work that led to ZEVASKYN at Stanford University under their pioneering Venture Philanthropy Model. This approval marks a historic moment for the EB community as the third FDA approved treatment and the first autologous, cell-based gene therapy for RDEB (Recessive Dystrophic Epidermolysis Bullosa).
Eddie Vedder’s Quest to Help Cure a Rare Disease Subject of New Documentary
April 22, 2025
Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure a rare skin disease. Inspired to take action after a family friend’s child was born with the malady, Vedder’s work leveraging the fame and draw of his shows for curing epidermolysis bullosa (EB) has been turned into a “powerful” upcoming documentary set to debut at Tribeca Film Festival in June.
Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure a rare skin disease. Inspired to take action after a family friend’s child was born with the malady, Vedder’s work leveraging the fame and draw of his shows for curing epidermolysis bullosa (EB) has been turned into a “powerful” upcoming documentary set to debut at Tribeca Film Festival in June.
Eddie Vedder’s quest to help cure a rare disease subject of new documentary
April 17, 2025
“Matter of Time,” a documentary featuring Pearl Jam frontman Eddie Vedder that is set to debut this summer at the Tribeca Film Festival, is being billed as much more than a concert film – it’s a rallying cry for action. A string of 2023 solo concerts in Seattle are the backdrop for the film, which chronicles Vedder’s efforts to raise funds for clinical research for Epidermolysis Bullosa, a rare genetic skin disease that causes blisters and skin erosion and predominantly affects children.
“Matter of Time,” a documentary featuring Pearl Jam frontman Eddie Vedder that is set to debut this summer at the Tribeca Film Festival, is being billed as much more than a concert film – it’s a rallying cry for action. A string of 2023 solo concerts in Seattle are the backdrop for the film, which chronicles Vedder’s efforts to raise funds for clinical research for Epidermolysis Bullosa, a rare genetic skin disease that causes blisters and skin erosion and predominantly affects children.
Plunge for Patterson raised funds for a good cause
March 30, 2025
The Plunge for Patterson was held Sunday March 30 on Alki Beach in support of research for treatments for Epidermolysis Bullosa (EB) , a genetic skin disorder. Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. Patterson is a nine year old, who along with his parents have to deal with his condition daily but they champion fund raising efforts like this to help support research into the disorder.
The Plunge for Patterson was held Sunday March 30 on Alki Beach in support of research for treatments for Epidermolysis Bullosa (EB) , a genetic skin disorder. Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. Patterson is a nine year old, who along with his parents have to deal with his condition daily but they champion fund raising efforts like this to help support research into the disorder.
Plunge for Patterson on Alki will raise funds for medical research March 30
March 26, 2025
You have the opportunity this coming Sunday to do something fun that truly helps people. The Plunge for Patterson will see as many as want to participate in a dash into Puget Sound to raise funds for the-EB Research Partnership, a global non profit organization dedicated to finding a cure for Epidermylosis Bullosa.
You have the opportunity this coming Sunday to do something fun that truly helps people. The Plunge for Patterson will see as many as want to participate in a dash into Puget Sound to raise funds for the-EB Research Partnership, a global non profit organization dedicated to finding a cure for Epidermylosis Bullosa.
Polar plunge raises thousands for John Hudson Dilgen, Staten Islander with rare skin disease
March 23, 2025
Dozens of participants — both two-legged and four-legged alike — partook in a polar plunge fundraiser in the waters off South Beach Sunday in the name of John Hudson Dilgen. Dilgen, a 22-year-old Tottenville resident, has been battling epidermolysis bullosa (EB), a rare, life-threatening genetic disorder that causes skin to blister and tear at the slightest touch, since infancy.
Dozens of participants — both two-legged and four-legged alike — partook in a polar plunge fundraiser in the waters off South Beach Sunday in the name of John Hudson Dilgen. Dilgen, a 22-year-old Tottenville resident, has been battling epidermolysis bullosa (EB), a rare, life-threatening genetic disorder that causes skin to blister and tear at the slightest touch, since infancy.
Annual Plunge For Elodie Raised Millions To Fight Rare Skin Disease
March 22, 2025
Nearly 150 people braved the cold and plunged head first into the waters at Morses Pond Beach in Wellesley on Saturday for the 8th Annual Plunge for Elodie fundraiser. “Our very good friend Emily from high school, her daughter was born with Epidermolysis Bullosa, we call EB” Kristan Khitikian, an event organizer, told WBZ NewsRadio.
Nearly 150 people braved the cold and plunged head first into the waters at Morses Pond Beach in Wellesley on Saturday for the 8th Annual Plunge for Elodie fundraiser. “Our very good friend Emily from high school, her daughter was born with Epidermolysis Bullosa, we call EB” Kristan Khitikian, an event organizer, told WBZ NewsRadio.
Wellesley will host 8th annual Plunge for Elodie to benefit Epidermolysis bullosa research
March 21, 2025
A clarity hits Wellesley's Matthew Liebman when he submerges. The junior football player has participated in the Plunge for Elodie the past two years with his football teammates. "You run in and a shock hits you," Liebman said. "There's so many people running with you. You get out and you're freezing, but it's really fun."
A clarity hits Wellesley's Matthew Liebman when he submerges. The junior football player has participated in the Plunge for Elodie the past two years with his football teammates. "You run in and a shock hits you," Liebman said. "There's so many people running with you. You get out and you're freezing, but it's really fun."
Join the Plunge for Elodie and help kids fight rare skin disorder
March 15, 2024
The 8th annual Plunge for Elodie is scheduled for March 22 at 10:30am at Wellesley’s Morses Pond to raise awareness and funds regarding the rare, life-threatening genetic skin disorder Epidermolysis Bullosa. More than 20 such events will be held across six countries with a fundraising goal of $600K. The Plunge for Elodie was created by 10 childhood friends of Elodie’s mom, Emily Kubik. Elodie was born in 2016 with a severe form of EB. Kids with EB are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. They face severe pain, open external and internal wounds, and a grueling daily bandaging process.
The 8th annual Plunge for Elodie is scheduled for March 22 at 10:30am at Wellesley’s Morses Pond to raise awareness and funds regarding the rare, life-threatening genetic skin disorder Epidermolysis Bullosa. More than 20 such events will be held across six countries with a fundraising goal of $600K. The Plunge for Elodie was created by 10 childhood friends of Elodie’s mom, Emily Kubik. Elodie was born in 2016 with a severe form of EB. Kids with EB are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. They face severe pain, open external and internal wounds, and a grueling daily bandaging process.
Greensboro Plunge For Elodie raises awareness for rare disease
March 15, 2025
Community members stepped up to help raise awareness about a rare, life-threatening disease. The annual Plunge for Elodie took place earlier Saturday at the Greensboro Aquatic Center. The fundraiser included people diving into the water to raise money to support research on epidermolysis bullosa. The genetic disorder causes the skin to be very fragile. Today's plunge was held in honor of Brooks Kendrick. The 5-year-old has a milder subtype of the disorder called EB Simplex.
Community members stepped up to help raise awareness about a rare, life-threatening disease. The annual Plunge for Elodie took place earlier Saturday at the Greensboro Aquatic Center. The fundraiser included people diving into the water to raise money to support research on epidermolysis bullosa. The genetic disorder causes the skin to be very fragile. Today's plunge was held in honor of Brooks Kendrick. The 5-year-old has a milder subtype of the disorder called EB Simplex.
Padres and Mariners will officially play for "Vedder Cup" beginning in 2025
March 14, 2025
The San Diego Padres and Seattle Mariners announced today along with rock and roll hall of famer, multi-Grammy award winner, rock legend, and one-time resident of both San Diego and Seattle, Eddie Vedder that the two clubs will play annually for the Vedder Cup in their season rivalry series beginning in 2025... As part of the annual series, the Mariners and Padres will also partner to support EB Research Partnership, a charity co-founded by Eddie and Jill Vedder as a trailblazing nonprofit organization dedicated to funding research to discover treatments and cures for Epidermolysis Bullosa (EB).
The San Diego Padres and Seattle Mariners announced today along with rock and roll hall of famer, multi-Grammy award winner, rock legend, and one-time resident of both San Diego and Seattle, Eddie Vedder that the two clubs will play annually for the Vedder Cup in their season rivalry series beginning in 2025... As part of the annual series, the Mariners and Padres will also partner to support EB Research Partnership, a charity co-founded by Eddie and Jill Vedder as a trailblazing nonprofit organization dedicated to funding research to discover treatments and cures for Epidermolysis Bullosa (EB).
Padres, Mariners to Play for ‘Vedder Cup’ in Honor of Pearl Jam Frontman – and for Charity Too
March 14, 2025
The Padres and Mariners will be pursuing more than their respective division titles when they meet this year. Beginning this season, the teams said Friday, they will join rock star Eddie Vedder in creating the real Vedder Cup, the prize for the victor in their six-game season series...As part of the annual series, the teams will join in supporting the EB Research Partnership, a charity co-founded by Eddie and Jill Vedder to fund research to discover treatments and cures for Epidermolysis Bullosa, a rare genetic condition that causes skin damage, including blistering and tearing.
The Padres and Mariners will be pursuing more than their respective division titles when they meet this year. Beginning this season, the teams said Friday, they will join rock star Eddie Vedder in creating the real Vedder Cup, the prize for the victor in their six-game season series...As part of the annual series, the teams will join in supporting the EB Research Partnership, a charity co-founded by Eddie and Jill Vedder to fund research to discover treatments and cures for Epidermolysis Bullosa, a rare genetic condition that causes skin damage, including blistering and tearing.
Polar Plunge in honor of Staten Islander with rare skin disease planned for this month
March 13, 2025
A fundraising Polar Plunge to honor John Hudson Dilgen will take place this month in South Beach to raise awareness and research funding for epidermolysis bullosa (EB), a rare, life-threatening genetic disorder that the young Tottenville man has been battling since infancy. During the Plunge for John Hudson, set for March 23, participants will head into the frigid ocean off South Beach, raising funds to support the EB Research Partnership (EBRP), the largest non-profit organization dedicated to funding research aimed at treating and ultimately curing EB.
A fundraising Polar Plunge to honor John Hudson Dilgen will take place this month in South Beach to raise awareness and research funding for epidermolysis bullosa (EB), a rare, life-threatening genetic disorder that the young Tottenville man has been battling since infancy. During the Plunge for John Hudson, set for March 23, participants will head into the frigid ocean off South Beach, raising funds to support the EB Research Partnership (EBRP), the largest non-profit organization dedicated to funding research aimed at treating and ultimately curing EB.
8th Annual Plunge for Elodie Poised to Surpass $3 Million Raised for EB Research Partnership
February 28, 2025
EB Research Partnership (EBRP) announces the 8th annual Plunge for Elodie scheduled for March 15 - May 17, 2025. Since its inception, the Plunge for Elodie has evolved from a small hometown fundraiser into an impactful global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the rare, life-threatening genetic skin disorder Epidermolysis Bullosa (EB). 2025 marks a groundbreaking year for the Plunge for Elodie with more than 21 events across six countries and a fundraising goal of $600,000, which would help the movement's fundraising total surpass $3M raised for life-saving EB research since 2018.
EB Research Partnership (EBRP) announces the 8th annual Plunge for Elodie scheduled for March 15 - May 17, 2025. Since its inception, the Plunge for Elodie has evolved from a small hometown fundraiser into an impactful global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the rare, life-threatening genetic skin disorder Epidermolysis Bullosa (EB). 2025 marks a groundbreaking year for the Plunge for Elodie with more than 21 events across six countries and a fundraising goal of $600,000, which would help the movement's fundraising total surpass $3M raised for life-saving EB research since 2018.
MICHAEL HUND SELECTED AS TOP CEO OF THE YEAR IN MEDICAL RESEARCH BY IAOTP
January 23, 2025
Michael Hund, CEO of EBRP, was recently selected as Top CEO of the Year in Medical Research 2025 by the International Association of Top Professionals (IAOTP) for his outstanding leadership, dedication, and commitment to the healthcare industry. Inclusion with the International Association of Top Professionals is an honor in itself; only a few members in each discipline are chosen for this distinction. These special honorees are distinguished based on their professional accomplishments, academic achievements, leadership abilities, longevity in the field, other affiliations, and contributions to their communities.
Michael Hund, CEO of EBRP, was recently selected as Top CEO of the Year in Medical Research 2025 by the International Association of Top Professionals (IAOTP) for his outstanding leadership, dedication, and commitment to the healthcare industry. Inclusion with the International Association of Top Professionals is an honor in itself; only a few members in each discipline are chosen for this distinction. These special honorees are distinguished based on their professional accomplishments, academic achievements, leadership abilities, longevity in the field, other affiliations, and contributions to their communities.
PEARL JAM gives a GIANT shout out
November 23 2024
A special connection between the GIANTS and one of the biggest rock bands of all time took centre stage at ENGIE Stadium on Thursday night at Pearl Jam's Sydney concert. Performing the final leg of their Dark Matter World Tour in front of a sold-out ENGIE Stadium- the home of the GIANTS- Pearl Jam and their famed front man Eddie Vedder took time to thank the GIANTS for their support in a cause close to Vedder’s heart.
A special connection between the GIANTS and one of the biggest rock bands of all time took centre stage at ENGIE Stadium on Thursday night at Pearl Jam's Sydney concert. Performing the final leg of their Dark Matter World Tour in front of a sold-out ENGIE Stadium- the home of the GIANTS- Pearl Jam and their famed front man Eddie Vedder took time to thank the GIANTS for their support in a cause close to Vedder’s heart.
Iconic Pearl Jam frontman Calls AFL Legend Jonathan Brown on Stage during melbourne show
November 22 2024
Iconic Pearl Jam frontman Eddie Vedder brought Brisbane Lions legend Jonathan Brown on stage during the band’s Melbourne show at Marvel Stadium on Saturday night. A photo from the crowd shows Brown, a three-time AFL premiership champion, with guitar in hand alongside Vedder in front of the packed stadium. “Jonathan Brown got called on stage by Eddie Vedder as ‘my mate Browny’ tonight in Melbourne,” AAP’s Oliver Caffrey said on social media.
Iconic Pearl Jam frontman Eddie Vedder brought Brisbane Lions legend Jonathan Brown on stage during the band’s Melbourne show at Marvel Stadium on Saturday night. A photo from the crowd shows Brown, a three-time AFL premiership champion, with guitar in hand alongside Vedder in front of the packed stadium. “Jonathan Brown got called on stage by Eddie Vedder as ‘my mate Browny’ tonight in Melbourne,” AAP’s Oliver Caffrey said on social media.
AusBiotech 2024 National Conference Programme Unveiled
August 29 2024
AusBiotech 2024 is Australia’s premier life science conference and the flagship event of Australia’s biggest week in biotech. This year will be the biggest programme to date, featuring over 60 engaging sessions and more than 200 speakers in Melbourne from 30 October-1 November.
AusBiotech 2024 is Australia’s premier life science conference and the flagship event of Australia’s biggest week in biotech. This year will be the biggest programme to date, featuring over 60 engaging sessions and more than 200 speakers in Melbourne from 30 October-1 November.
Giants and EB Research partnership dedicate match day to raise crucial funds for epidermolysis bullosa
August 12, 2024
The GIANTS are proud to continue their partnership with EB Research Partnership (EBRP), dedicating the final home game of the season at ENGIE Stadium to raise crucial funds for those battling Epidermolysis Bullosa (EB). As a charity partner of the GIANTS, EBRP is thrilled to align their match day with Members Round, honouring and celebrating the support of valued GIANTS members while celebrating the courage of those battling EB, and all rare diseases, worldwide. “We are proud to partner with EBRP,” said GIANTS CEO David Matthews. “This Members Round, we are thrilled to highlight our partnership and the fantastic initiatives we’ve achieved together this year, as well as continue to support the critical, life-saving work made possible by EB Research Partnership.”
The GIANTS are proud to continue their partnership with EB Research Partnership (EBRP), dedicating the final home game of the season at ENGIE Stadium to raise crucial funds for those battling Epidermolysis Bullosa (EB). As a charity partner of the GIANTS, EBRP is thrilled to align their match day with Members Round, honouring and celebrating the support of valued GIANTS members while celebrating the courage of those battling EB, and all rare diseases, worldwide. “We are proud to partner with EBRP,” said GIANTS CEO David Matthews. “This Members Round, we are thrilled to highlight our partnership and the fantastic initiatives we’ve achieved together this year, as well as continue to support the critical, life-saving work made possible by EB Research Partnership.”
Startup Speaker: Michael Hund, CEO of EB research Partnership
July 10, 2024
Early in his career, Michael Hund, MBA (SOM '18), realized the incredible impact that dedicated research could have on transforming lives, particularly those of children suffering from rare diseases. This passion led him to EB Research Partnership, where he now leads efforts to cure Epidermolysis Bullosa (EB), a debilitating rare genetic skin disorder. Michael’s journey began in the Flint Hills of Kansas, where he grew up on a cattle ranch. His experiences there instilled in him values like resilience, hard work, and community spirit, which have guided him throughout his career. He shared a quote from one of his personal heroes, Muhammad Ali: “Service to others is the rent you pay for your room here on earth.” This philosophy has driven Michael to use his talents to make a meaningful difference in the healthcare industry.
Early in his career, Michael Hund, MBA (SOM '18), realized the incredible impact that dedicated research could have on transforming lives, particularly those of children suffering from rare diseases. This passion led him to EB Research Partnership, where he now leads efforts to cure Epidermolysis Bullosa (EB), a debilitating rare genetic skin disorder. Michael’s journey began in the Flint Hills of Kansas, where he grew up on a cattle ranch. His experiences there instilled in him values like resilience, hard work, and community spirit, which have guided him throughout his career. He shared a quote from one of his personal heroes, Muhammad Ali: “Service to others is the rent you pay for your room here on earth.” This philosophy has driven Michael to use his talents to make a meaningful difference in the healthcare industry.
Grateful for Graham: A 4-year-old and his New Hartford family struggle with rare skin disorder
May 18, 2024
It’s known as “the worst disease you’ve never heard of,” and for 4-year-old Graham Robertello, it’s a painful way of life. Good thing he’s not tackling it alone. Robertello, of New Hartford, was born with Epidermolysis Bullosa (EB), a rare skin sensitivity disorder that can lead to tears, blisters and worse from even the most minor contact or friction. His parents, Carl and Amanda, have been with Graham every step of the way and have joined the fight to raise awareness and money for a possible cure. “Being rare, a lot of people don’t know about EB. At its core, it is a connective tissue disorder. It effects Graham’s skin, but it also affects him internally as well,” explained Amanda Robertello in a recent interview with the Daily Sentinel at their New Hartford home.
It’s known as “the worst disease you’ve never heard of,” and for 4-year-old Graham Robertello, it’s a painful way of life. Good thing he’s not tackling it alone. Robertello, of New Hartford, was born with Epidermolysis Bullosa (EB), a rare skin sensitivity disorder that can lead to tears, blisters and worse from even the most minor contact or friction. His parents, Carl and Amanda, have been with Graham every step of the way and have joined the fight to raise awareness and money for a possible cure. “Being rare, a lot of people don’t know about EB. At its core, it is a connective tissue disorder. It effects Graham’s skin, but it also affects him internally as well,” explained Amanda Robertello in a recent interview with the Daily Sentinel at their New Hartford home.
Jill and Eddie Vedder gathered good people for a good cause on Alki Beach
April 21, 2024
Two of West Seattle's most well known residents, Jill and Eddie Vedder came to Alki Beach on April 21 along with a large group of donors to Plunge for Elodie. The plunge was in support of research for treatments for Epidermolysis Bullosa, a genetic skin disorder.Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. Plunges such as this now take place all over the world. To date they've raised 2.5 million dollars locally and this year alone they are at $450,000. The first Seattle plunge was last year but Jill said, "This is our first big year where we decided to really rally the troops and bring out our community to support us."
Two of West Seattle's most well known residents, Jill and Eddie Vedder came to Alki Beach on April 21 along with a large group of donors to Plunge for Elodie. The plunge was in support of research for treatments for Epidermolysis Bullosa, a genetic skin disorder.Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. Plunges such as this now take place all over the world. To date they've raised 2.5 million dollars locally and this year alone they are at $450,000. The first Seattle plunge was last year but Jill said, "This is our first big year where we decided to really rally the troops and bring out our community to support us."
Eddie Vedder at West Seattle polar plunge event to benefit skin disease research
April 21, 2024
Pearl Jam lead vocalist Eddie Vedder was at Alki Beach on Sunday, participating in a polar plunge event to benefit research for a life-threatening skin disorder that affects children. Longtime West Seattleites Eddie & Jill Vedder co-founded EB Research Partnership (EBRP) in 2010 along with a dedicated group of parents who set out to save their children’s lives. EB stands for Epidermolysis Bullosa, a rare genetic disorder that affects children from birth. People with EB lack critical proteins that bind the skin's two layers together, causing blisters, severe pain, and wounds that may never heal. The event is called the Plunge for Elodie, dedicated to 7-year-old Elodie Kubik, who lives with a severe form of EB. The first Plunge for Elodie took place in 2018 in Wellesley, Massachusetts. Now, it has events being held worldwide.
Pearl Jam lead vocalist Eddie Vedder was at Alki Beach on Sunday, participating in a polar plunge event to benefit research for a life-threatening skin disorder that affects children. Longtime West Seattleites Eddie & Jill Vedder co-founded EB Research Partnership (EBRP) in 2010 along with a dedicated group of parents who set out to save their children’s lives. EB stands for Epidermolysis Bullosa, a rare genetic disorder that affects children from birth. People with EB lack critical proteins that bind the skin's two layers together, causing blisters, severe pain, and wounds that may never heal. The event is called the Plunge for Elodie, dedicated to 7-year-old Elodie Kubik, who lives with a severe form of EB. The first Plunge for Elodie took place in 2018 in Wellesley, Massachusetts. Now, it has events being held worldwide.
Dozens take the 'Plunge for Patterson' to benefit research for rare skin disordeR
April 21, 2024
Dozens of people gathered at Alki Beach Sunday morning to "Plunge for Patterson," with the goal of raising awareness and money for a rare, genetic condition. Epidermolysis Bullosa, also known as "EB," causes fragile and blistering skin. "It makes me feel happy to see people supporting EB," said Patterson McKenzie, who was born with EB."You can get scraps anywhere at any time and we really want a cure for it." In his short life, McKenzie has benefited from the support of Jill and Eddie Vedder, a well-known West Seattle couple that co-founded the EB Research Partnership. In its almost decade of existence, EB Research Partnership has raised $60 million and counting. The money has helped lead to two FDA-approved treatments for EB. "It's a topical gene therapy that when Patterson gets a blister or open wound, they put it on at night and 24 hours later, that wound is healed," Jill Vedder said. "It's not a cure but it's such a huge massive achievement that just never existed before." Jill Vedder said seeing the community come together gives her hope that one day, soon, a cure for EB will become a reality.
Dozens of people gathered at Alki Beach Sunday morning to "Plunge for Patterson," with the goal of raising awareness and money for a rare, genetic condition. Epidermolysis Bullosa, also known as "EB," causes fragile and blistering skin. "It makes me feel happy to see people supporting EB," said Patterson McKenzie, who was born with EB."You can get scraps anywhere at any time and we really want a cure for it." In his short life, McKenzie has benefited from the support of Jill and Eddie Vedder, a well-known West Seattle couple that co-founded the EB Research Partnership. In its almost decade of existence, EB Research Partnership has raised $60 million and counting. The money has helped lead to two FDA-approved treatments for EB. "It's a topical gene therapy that when Patterson gets a blister or open wound, they put it on at night and 24 hours later, that wound is healed," Jill Vedder said. "It's not a cure but it's such a huge massive achievement that just never existed before." Jill Vedder said seeing the community come together gives her hope that one day, soon, a cure for EB will become a reality.
HOW TO LIVE WITH THE "WORST DISEASE" NO ONE KNOWS ABOUT? THE WAY BROOKS KENDRICK DOES
April 19, 2024
Both 4-year-old Brooks and his mother Annie Kendrick were born with large swatches of missing skin because of a single gene mutation called epidermolysis bullosa. They lack a protein that binds the skins’ top two layers together. Individuals with the most severe cases may not live to age 30. Others have a propensity for severe pain, disfigurement and wounds that may never heal... “I never dreamed of a cure,” Annie said. “It was just not an option. But I can honestly say now it’s not if but when.”
Both 4-year-old Brooks and his mother Annie Kendrick were born with large swatches of missing skin because of a single gene mutation called epidermolysis bullosa. They lack a protein that binds the skins’ top two layers together. Individuals with the most severe cases may not live to age 30. Others have a propensity for severe pain, disfigurement and wounds that may never heal... “I never dreamed of a cure,” Annie said. “It was just not an option. But I can honestly say now it’s not if but when.”
Plunge for Patterson at Alki Beach with Vedders & Friends to cure EB
April 13, 2024
Longtime West Seattleites Eddie & Jill Vedder co-founded EB Research Partnership (EBRP) in 2010 along with a dedicated group of parents set out to save their children’s lives. Their community will be rallying around Team Vedder by plunging into the cold waters of Puget Sound off Alki Beach on Sunday, April 21st at 10 am as part of a national campaign to raise money to treat and cure Epidermolysis Bullosa (EB), a family of painful and life-threatening rare genetic disorders that affect the body’s largest organ: the skin. This year, Team Vedder will be plunging Alki Beach with a local EB patient, Patterson, a young boy who, like Elodie, suffers from a severe form of EB. Patterson endures daily bandage changes that can be grueling and take time away from other activities. EB is challenging, as it affects so much more than just his skin. It is a constant battle, both physically and emotionally, as he navigates through pain, itch, inflammation, and wound care. But amidst the challenges, there is a powerful force that emerges – strength and resilience.
Longtime West Seattleites Eddie & Jill Vedder co-founded EB Research Partnership (EBRP) in 2010 along with a dedicated group of parents set out to save their children’s lives. Their community will be rallying around Team Vedder by plunging into the cold waters of Puget Sound off Alki Beach on Sunday, April 21st at 10 am as part of a national campaign to raise money to treat and cure Epidermolysis Bullosa (EB), a family of painful and life-threatening rare genetic disorders that affect the body’s largest organ: the skin. This year, Team Vedder will be plunging Alki Beach with a local EB patient, Patterson, a young boy who, like Elodie, suffers from a severe form of EB. Patterson endures daily bandage changes that can be grueling and take time away from other activities. EB is challenging, as it affects so much more than just his skin. It is a constant battle, both physically and emotionally, as he navigates through pain, itch, inflammation, and wound care. But amidst the challenges, there is a powerful force that emerges – strength and resilience.
Warm hearts triumph over cold water during plunge to benefit 7-year-old Wellesley girl
March 30, 2024
There was a bitter chill in the air. The howling wind only added more cold. But the conditions did not prevent dozens of Wellesley High School athletes from diving into the frigid water of Morses Pond on Saturday morning. This weekend marked the seventh annual “Plunge for Elodie” event, which raises money for awareness in the fight against the disease known as Epidermolysis Bullosa. The fundraiser and the event were designed for Elodie Kubik, a 7-year-old Wellesley child battling the rare genetic skin illness. Kubik’s specific form of the disease impacts about 1,200 people nationally. Elodie’s mother, Emily, is a former Wellesley lacrosse and track athlete. She smiled as a growing crowd of a couple hundred assembled around the town landmark. “It is amazing,” Emily Kubik said. “I love everyone here so much. I’ve been blown away. Managing this disease is so hard, but there have been some findings. Seeing all these people, who have come out here to support us, some of whom I don’t even know, has been a huge silver lining for my family.”
There was a bitter chill in the air. The howling wind only added more cold. But the conditions did not prevent dozens of Wellesley High School athletes from diving into the frigid water of Morses Pond on Saturday morning. This weekend marked the seventh annual “Plunge for Elodie” event, which raises money for awareness in the fight against the disease known as Epidermolysis Bullosa. The fundraiser and the event were designed for Elodie Kubik, a 7-year-old Wellesley child battling the rare genetic skin illness. Kubik’s specific form of the disease impacts about 1,200 people nationally. Elodie’s mother, Emily, is a former Wellesley lacrosse and track athlete. She smiled as a growing crowd of a couple hundred assembled around the town landmark. “It is amazing,” Emily Kubik said. “I love everyone here so much. I’ve been blown away. Managing this disease is so hard, but there have been some findings. Seeing all these people, who have come out here to support us, some of whom I don’t even know, has been a huge silver lining for my family.”
Hundreds brave the cold for the seventh annual Plunge for Elodie
March 30, 2024
Hundreds of people braved the cold and wind in Wellesley on Saturday for the seventh annual Plunge for Elodie, a fundraising event dedicated to raising awareness and funds for research into Epidermolysis Bullosa. The event is named after 7-year-old Elodie Kubik, who was born with EB, a rare genetic skin disorder. "It's really, really incredible. Beyond my wildest dreams," said Emily Kubik, Elodie's mother. "There was one year we had to cut through the ice and not gonna lie I think that year was warmer," Emily Kubik said. "So this will be an adventure as it always is." Among the crowd was NewsCenter 5's Erika Tarantal, who was honored for her work promoting the important cause over the years. "They've inspired a global movement and now there are two treatments for EB, not a cure yet," Tarantal said. "Elodie is on one of them, just the fact they've raised this much money, they are just the epitome of friendship, and they give true hope to this EB community."
Hundreds of people braved the cold and wind in Wellesley on Saturday for the seventh annual Plunge for Elodie, a fundraising event dedicated to raising awareness and funds for research into Epidermolysis Bullosa. The event is named after 7-year-old Elodie Kubik, who was born with EB, a rare genetic skin disorder. "It's really, really incredible. Beyond my wildest dreams," said Emily Kubik, Elodie's mother. "There was one year we had to cut through the ice and not gonna lie I think that year was warmer," Emily Kubik said. "So this will be an adventure as it always is." Among the crowd was NewsCenter 5's Erika Tarantal, who was honored for her work promoting the important cause over the years. "They've inspired a global movement and now there are two treatments for EB, not a cure yet," Tarantal said. "Elodie is on one of them, just the fact they've raised this much money, they are just the epitome of friendship, and they give true hope to this EB community."
First Lady Jill Biden discusses health and innovation at AWS IMAGINE: Nonprofit conference
March 21, 2024
On March 20, First Lady Jill Biden delivered remarks at the AWS IMAGINE: Nonprofit Conference at Amazon Web Services, Inc. (AWS) in Arlington, Virginia. The annual event brings together leaders from nonprofit, technology, and healthcare organizations from across the country to discuss how technology can accelerate mission outcomes... Michael Hund, CEO of EB Research Partnership, a nonprofit dedicated to finding a cure for a rare disease impacting children, reflected on Dr. Biden’s message, saying, “As a nonprofit leader, hearing the First Lady address the nonprofit sector directly and communicate her passion for reducing structural and systemic inequities in health, and specifically women’s health, provided powerful inspiration for all of us pursuing ambitious goals, like finding cures, protecting the planet, and scaling vital services to so many around the world.”
On March 20, First Lady Jill Biden delivered remarks at the AWS IMAGINE: Nonprofit Conference at Amazon Web Services, Inc. (AWS) in Arlington, Virginia. The annual event brings together leaders from nonprofit, technology, and healthcare organizations from across the country to discuss how technology can accelerate mission outcomes... Michael Hund, CEO of EB Research Partnership, a nonprofit dedicated to finding a cure for a rare disease impacting children, reflected on Dr. Biden’s message, saying, “As a nonprofit leader, hearing the First Lady address the nonprofit sector directly and communicate her passion for reducing structural and systemic inequities in health, and specifically women’s health, provided powerful inspiration for all of us pursuing ambitious goals, like finding cures, protecting the planet, and scaling vital services to so many around the world.”
Wellesley's Plunge for Elodie has become global cause to fight rare skin disorder
March 18, 2024
It may not be bathing suit weather quite yet, but don't tell that to those who plan to gather on Saturday, March 30, at Morses Pond. Dozens are expected for the 7th annual Plunge for Elodie, which is in support of 7-year-old Elodie Kubik, who is battling a life-threatening rare genetic skin disorder called epidermolysis bullosa (EB). Money raised from those who plunge into freezing water benefit the EB Research Partnership. The event also raises awareness of EB. “EB is a daily challenge,” said Elodie’s mother, Emily Kubik, a Wellesley native. “The hardest part is the chronic and acute pain that she endures. What people may not realize is that this disease affects every part of the body, not just the skin. Elodie's activity level is limited, the nightly bandaging process is grueling, and there are constant complications and doctor's appointments to attend.”
It may not be bathing suit weather quite yet, but don't tell that to those who plan to gather on Saturday, March 30, at Morses Pond. Dozens are expected for the 7th annual Plunge for Elodie, which is in support of 7-year-old Elodie Kubik, who is battling a life-threatening rare genetic skin disorder called epidermolysis bullosa (EB). Money raised from those who plunge into freezing water benefit the EB Research Partnership. The event also raises awareness of EB. “EB is a daily challenge,” said Elodie’s mother, Emily Kubik, a Wellesley native. “The hardest part is the chronic and acute pain that she endures. What people may not realize is that this disease affects every part of the body, not just the skin. Elodie's activity level is limited, the nightly bandaging process is grueling, and there are constant complications and doctor's appointments to attend.”
EB Research Partnership Joins the GIANTS Family
March 8, 2024
The GIANTS are delighted to partner with EBRP, with the charity’s logo to be proudly displayed on the front of the GIANTS’ playing shorts from Saturday night. "We are thrilled to partner with EBRP, they are a wonderful organisation dedicated to supporting people in need, and particularly children,” GIANTS CEO David Matthews said. “The work they do to raise funds for such a meaningful cause it to be truly commended and we’re looking forward to helping raise awareness for the amazing work they do. We are hoping that together we can help make a difference and play our part in helping find treatments, and hopefully a cure, for this debilitating disease. Our players are proud they will run out onto a sold-out ENGIE Stadium on Saturday night to take on Collingwood in the inaugural Opening Round with EBRP on their shorts.” EB Research Partnership CEO Michael Hund said he was grateful for the GIANTS joining the worldwide team supporting EBRP’s goal to cure EB by 2030 and create a model that can impact thousands of other rare diseases.
The GIANTS are delighted to partner with EBRP, with the charity’s logo to be proudly displayed on the front of the GIANTS’ playing shorts from Saturday night. "We are thrilled to partner with EBRP, they are a wonderful organisation dedicated to supporting people in need, and particularly children,” GIANTS CEO David Matthews said. “The work they do to raise funds for such a meaningful cause it to be truly commended and we’re looking forward to helping raise awareness for the amazing work they do. We are hoping that together we can help make a difference and play our part in helping find treatments, and hopefully a cure, for this debilitating disease. Our players are proud they will run out onto a sold-out ENGIE Stadium on Saturday night to take on Collingwood in the inaugural Opening Round with EBRP on their shorts.” EB Research Partnership CEO Michael Hund said he was grateful for the GIANTS joining the worldwide team supporting EBRP’s goal to cure EB by 2030 and create a model that can impact thousands of other rare diseases.
7th Annual Plunge for Elodie Set to Surpass $2.5 Million Raised for EB Research Partnership
February 29, 2024
EB Research Partnership (EBRP) announces the 7th annual Plunge For Elodie scheduled for March 10 - April 27, 2024. Since its inception, the Plunge for Elodie has evolved from a small hometown fundraiser into a global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the life-threatening rare genetic skin disorder, Epidermolysis Bullosa (EB). This year marks a groundbreaking year for the Plunge for Elodie with more than 20 events worldwide. The goal is to raise $500,000 in 2024 which would help the event's fundraising total surpass $2.5M raised for life-saving EB research since 2018.
EB Research Partnership (EBRP) announces the 7th annual Plunge For Elodie scheduled for March 10 - April 27, 2024. Since its inception, the Plunge for Elodie has evolved from a small hometown fundraiser into a global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the life-threatening rare genetic skin disorder, Epidermolysis Bullosa (EB). This year marks a groundbreaking year for the Plunge for Elodie with more than 20 events worldwide. The goal is to raise $500,000 in 2024 which would help the event's fundraising total surpass $2.5M raised for life-saving EB research since 2018.
Watch Eddie Vedder & Post Malone Duet on ‘Better Man’ to Help Raise $1 Million for EB Research
February 22, 2024
Eddie Vedder and Post Malone joined forces — both onstage and off — for a good cause. The two stars sang a duet of Pearl Jam‘s “Better Man” last week for the second annual Reportin’ for Duty benefit honoring late actor Leslie Jordan, which this year took place at Humble Baron at Nearest Green Distillery in Shelbyville, Tenn., and raised more than $1 million for the EB Research Partnership. And on Thursday (Feb. 22), Posty shared a video of their performance on YouTube, giving fans who didn’t attend a chance to see him take the stage with Vedder. The clip finds both Vedder and Malone wielding acoustic guitars as they take turns singing lines from the 1994 track, a No. 2 Alternative Airplay hit for Pearl Jam. The event also featured performances from The War and Treaty, Jelly Roll, Ruby Amanfu, Jake Wesley Rogers and Dan Spencer.
Eddie Vedder and Post Malone joined forces — both onstage and off — for a good cause. The two stars sang a duet of Pearl Jam‘s “Better Man” last week for the second annual Reportin’ for Duty benefit honoring late actor Leslie Jordan, which this year took place at Humble Baron at Nearest Green Distillery in Shelbyville, Tenn., and raised more than $1 million for the EB Research Partnership. And on Thursday (Feb. 22), Posty shared a video of their performance on YouTube, giving fans who didn’t attend a chance to see him take the stage with Vedder. The clip finds both Vedder and Malone wielding acoustic guitars as they take turns singing lines from the 1994 track, a No. 2 Alternative Airplay hit for Pearl Jam. The event also featured performances from The War and Treaty, Jelly Roll, Ruby Amanfu, Jake Wesley Rogers and Dan Spencer.
Reportin’ For Duty Raises Over $1 Million For EB Research Partnership
February 22, 2024
The second annual Reportin’ For Duty took place last weekend, honoring the late Leslie Jordan’s life of service by raising over $1 Million for EB Research Partnership (EBRP), an organization close to his heart that is dedicated to funding research to treat and cure Epidermolysis Bullosa (EB). The night featured intimate performances from Post Malone, EBRP Co-Founder Eddie Vedder, The War And Treaty, Jelly Roll, Ruby Amanfu, Jake Wesley Rogers and Dan Spencer. Taking place at Humble Baron at Nearest Green Distillery in Shelbyville, TN, the concert and live auction helped support EBRP, which funds innovative and life-saving rare disease research projects. Eddie Vedder on the event: "I can’t find words to say how powerful and inspiring it was to be gathered with such incredible musicians under one small roof for a cause that’s so impactful on young people's lives. The performances by Post Malone, The War and Treaty, Jake Wesley
Rogers, Jelly Roll, Ruby Amanfu, Dan Spencer and Danny Myrick, were some of their best I’ve ever witnessed. I had chills. Had tears. And all the while with a grin of positivity and action. I speak for the entire tight-knit organization of EBRP that we are all so grateful for all the artists, their energies, and the energy of a beautiful crowd as well. THANK YOU! The generosity of all who were involved is tremendously appreciated and will help us continue to fund research
aimed at curing EB by 2030.”
The second annual Reportin’ For Duty took place last weekend, honoring the late Leslie Jordan’s life of service by raising over $1 Million for EB Research Partnership (EBRP), an organization close to his heart that is dedicated to funding research to treat and cure Epidermolysis Bullosa (EB). The night featured intimate performances from Post Malone, EBRP Co-Founder Eddie Vedder, The War And Treaty, Jelly Roll, Ruby Amanfu, Jake Wesley Rogers and Dan Spencer. Taking place at Humble Baron at Nearest Green Distillery in Shelbyville, TN, the concert and live auction helped support EBRP, which funds innovative and life-saving rare disease research projects. Eddie Vedder on the event: "I can’t find words to say how powerful and inspiring it was to be gathered with such incredible musicians under one small roof for a cause that’s so impactful on young people's lives. The performances by Post Malone, The War and Treaty, Jake Wesley
Rogers, Jelly Roll, Ruby Amanfu, Dan Spencer and Danny Myrick, were some of their best I’ve ever witnessed. I had chills. Had tears. And all the while with a grin of positivity and action. I speak for the entire tight-knit organization of EBRP that we are all so grateful for all the artists, their energies, and the energy of a beautiful crowd as well. THANK YOU! The generosity of all who were involved is tremendously appreciated and will help us continue to fund research
aimed at curing EB by 2030.”
Eddie Vedder, Post Malone Team Up At Tennessee Benefit
February 18, 2024
Pearl Jam’s Eddie Vedder and Post Malone teamed up last night (Feb. 17) at the second Reportin’ for Duty benefit concert at the 250-capacity Nearest Green Distillery in Shelbyville, Tn., to perform Pearl Jam’s “Better Man,” the late Tom Petty’s “I Won’t Back Down” and a cover of the ’60s song “Last Kiss,” which became an improbable massive hit for Pearl Jam in 1999. Earlier in the evening, Vedder covered another Petty song, “Keep Me in Your Heart,” solo acoustic. Other performers included Jelly Roll, the War and Treaty, Ruby Amanfu and Jake Wesley Rogers. Proceeds from the event will support EB Research Partnership (EBRP), which works to identify treatments and cures for the debilitating skin disease Epidermolysis Bullosa. In 2010, Vedder and his wife Jill co-founded the organization, which hosted a similar event last year at Nashville’s Grand Ole Opry also held in memory of late actor and EBRP champion Leslie Jordan.
Pearl Jam’s Eddie Vedder and Post Malone teamed up last night (Feb. 17) at the second Reportin’ for Duty benefit concert at the 250-capacity Nearest Green Distillery in Shelbyville, Tn., to perform Pearl Jam’s “Better Man,” the late Tom Petty’s “I Won’t Back Down” and a cover of the ’60s song “Last Kiss,” which became an improbable massive hit for Pearl Jam in 1999. Earlier in the evening, Vedder covered another Petty song, “Keep Me in Your Heart,” solo acoustic. Other performers included Jelly Roll, the War and Treaty, Ruby Amanfu and Jake Wesley Rogers. Proceeds from the event will support EB Research Partnership (EBRP), which works to identify treatments and cures for the debilitating skin disease Epidermolysis Bullosa. In 2010, Vedder and his wife Jill co-founded the organization, which hosted a similar event last year at Nashville’s Grand Ole Opry also held in memory of late actor and EBRP champion Leslie Jordan.
Watch Post Malone & Eddie Vedder Duet On Pearl Jam & Tom Petty Songs At Reportin’ For Duty Benefit
February 18, 2024
Last night, both Post Malone and Eddie Vedder performed at the Reportin’ For Duty benefit concert, the second annual tribute show dedicated to the late actor and comedian Leslie Jordan. This year’s event took place at Humble Baron (the “world’s longest bar“) at the Nearest Green Distillery in Shelbyville, Tennessee. During the show, Post Malone and Vedder teamed up to duet on Pearl Jam’s “Better Man” and Tom Petty’s “I Won’t Back Down.” The show raised money for EB Research Partnership, which was founded by Eddie Vedder and his wife Jill to research the skin disease Epidermolysis Bullosa.
Last night, both Post Malone and Eddie Vedder performed at the Reportin’ For Duty benefit concert, the second annual tribute show dedicated to the late actor and comedian Leslie Jordan. This year’s event took place at Humble Baron (the “world’s longest bar“) at the Nearest Green Distillery in Shelbyville, Tennessee. During the show, Post Malone and Vedder teamed up to duet on Pearl Jam’s “Better Man” and Tom Petty’s “I Won’t Back Down.” The show raised money for EB Research Partnership, which was founded by Eddie Vedder and his wife Jill to research the skin disease Epidermolysis Bullosa.
POST MALONE AND EDDIE VEDDER PERFORM “BETTER MAN” AND “I WON’T BACK DOWN” TOGETHER: WATCH
February 18, 2024
Post Malone and Eddie Vedder joined forces for an unexpected on-stage collaboration during the Reportin’ For Duty benefit concert in Shelbyville, Tennessee on Saturday night. The two performed covers of Pearl Jam’s “Better Man” and Tom Petty’s “I Won’t Back Down. The duet took place at the Humble Baron at the Nearest Green Whiskey Distillery, described as “the world’s longest bar.” Now in its second year, the tribute show is an intimate concert that celebrates the late comedian Leslie Jordan while raising funds for EB Research Partnership (EBRP). The benefit also featured the talents of Jelly Roll, The War And Treaty, Ruby Amanfu, Jake Wesley Rogers, and Dan Spencer.
Post Malone and Eddie Vedder joined forces for an unexpected on-stage collaboration during the Reportin’ For Duty benefit concert in Shelbyville, Tennessee on Saturday night. The two performed covers of Pearl Jam’s “Better Man” and Tom Petty’s “I Won’t Back Down. The duet took place at the Humble Baron at the Nearest Green Whiskey Distillery, described as “the world’s longest bar.” Now in its second year, the tribute show is an intimate concert that celebrates the late comedian Leslie Jordan while raising funds for EB Research Partnership (EBRP). The benefit also featured the talents of Jelly Roll, The War And Treaty, Ruby Amanfu, Jake Wesley Rogers, and Dan Spencer.
Eddie Vedder, Jelly Roll, Post Malone All Slated for Reportin’ for Duty Benefit
January 11, 2024
The second annual Reportin’ for Duty benefit concert will feature a diverse roster of musicians that includes Post Malone, Eddie Vedder, Jelly Roll, the War and Treaty, Jake Wesley Rogers, and Dan Spencer. The concert will take place at the “world’s longest bar,” the 250-person–capacity Humble Baron at the Nearest Green Whiskey Distillery in Shelbyville, Tennessee, on Feb. 17. The event will raise funds for EB Research Partnership (EBRP), which Vedder and his wife Jill Vedder co-founded to fund research to treat and cure Epidermolysis Bullosa, a painful skin disease. Money for this year’s installment will help aid children battling EB. The benefit’s organizers launched the event in memory of the late actor Leslie Jordan who used the phrase “reportin’ for duty” to describe his commitment to service.
The second annual Reportin’ for Duty benefit concert will feature a diverse roster of musicians that includes Post Malone, Eddie Vedder, Jelly Roll, the War and Treaty, Jake Wesley Rogers, and Dan Spencer. The concert will take place at the “world’s longest bar,” the 250-person–capacity Humble Baron at the Nearest Green Whiskey Distillery in Shelbyville, Tennessee, on Feb. 17. The event will raise funds for EB Research Partnership (EBRP), which Vedder and his wife Jill Vedder co-founded to fund research to treat and cure Epidermolysis Bullosa, a painful skin disease. Money for this year’s installment will help aid children battling EB. The benefit’s organizers launched the event in memory of the late actor Leslie Jordan who used the phrase “reportin’ for duty” to describe his commitment to service.
CEOs You Should Know: Michael Hund - CEO EB Research Partnership
November 29, 2023
Join iHeartMedia as we sit down for regular conversations with CEOs in our community that you should know. Get leadership tips, hear business stories and much more! Michael Hund is the CEO of EB Research Partnership (EBRP), a trailblazing medical research organization focused on curing Epidermolysis Bullosa (EB), a life-threatening genetic skin disease. Under his leadership EBRP has accelerated the landscape from 2 to over 40 clinical trials and via their award winning venture philanthropy methodology funded the first FDA approved treatment for EB in 2023, the first ever topical gene therapy.
Join iHeartMedia as we sit down for regular conversations with CEOs in our community that you should know. Get leadership tips, hear business stories and much more! Michael Hund is the CEO of EB Research Partnership (EBRP), a trailblazing medical research organization focused on curing Epidermolysis Bullosa (EB), a life-threatening genetic skin disease. Under his leadership EBRP has accelerated the landscape from 2 to over 40 clinical trials and via their award winning venture philanthropy methodology funded the first FDA approved treatment for EB in 2023, the first ever topical gene therapy.
IMPLEMENTING A DYNAMIC VENTURE PHILANTHROPY PRACTICE
November 27, 2023
The role of nonprofit organizations has expanded to include investors, advocates, and supporters. Venture philanthropy provides a tool for nonprofits to accelerate the movement of therapeutic assets from bench to bedside using investment mechanisms. In this FasterCures TRAIN webinar, EB Research Partnership was part of a panel that discussed the myriad of ways EBRP has leveraged venture philanthropy to accelerate biomedical research and development for Epidermolysis Bullosa (EB).
The role of nonprofit organizations has expanded to include investors, advocates, and supporters. Venture philanthropy provides a tool for nonprofits to accelerate the movement of therapeutic assets from bench to bedside using investment mechanisms. In this FasterCures TRAIN webinar, EB Research Partnership was part of a panel that discussed the myriad of ways EBRP has leveraged venture philanthropy to accelerate biomedical research and development for Epidermolysis Bullosa (EB).
EB Research Partnership and Jill and Eddie Vedder raised over $5M to benefit life-saving rare disease research
November 14, 2023
Eddie Vedder played two intimate concerts in his hometown of Seattle at Benaroya Hall on October 23rd and 24th to bring support to a cause that is near to his heart – EB Research Partnership (EBRP). Alongside the emotional shows, EBRP hosted its first in-person Venture Into Cures Summit and Dinner... Over 3 days, Eddie Vedder and EBRP gathered nearly 5,000 people and raised over $5 million to fund life-saving research focused on accelerating treatments and cures for EB and beyond. "I am extremely humbled and grateful to be able to stand next to these heroic patients, parents, researchers, and doctors as we work together to find a cure for EB. Sharing this mission and message with people around the world has filled me with extreme pride and hope. My wife and I have been working on this cause for over a decade and it is amazing to reflect on the progress that has been made. We can find a cure – the promise is real," says Eddie Vedder, Pearl Jam lead singer and Co-Founder of EBRP.
Eddie Vedder played two intimate concerts in his hometown of Seattle at Benaroya Hall on October 23rd and 24th to bring support to a cause that is near to his heart – EB Research Partnership (EBRP). Alongside the emotional shows, EBRP hosted its first in-person Venture Into Cures Summit and Dinner... Over 3 days, Eddie Vedder and EBRP gathered nearly 5,000 people and raised over $5 million to fund life-saving research focused on accelerating treatments and cures for EB and beyond. "I am extremely humbled and grateful to be able to stand next to these heroic patients, parents, researchers, and doctors as we work together to find a cure for EB. Sharing this mission and message with people around the world has filled me with extreme pride and hope. My wife and I have been working on this cause for over a decade and it is amazing to reflect on the progress that has been made. We can find a cure – the promise is real," says Eddie Vedder, Pearl Jam lead singer and Co-Founder of EBRP.
At Eddie Vedder’s second Seattle show: Macklemore’s cape, Tom Petty’s guitar and a baseball
October 25, 2023
As he did the night before, Vedder seemed to revel in intimately engaging with the audience, which included many familiar faces from the EBRP community in town for a summit preceding the benefit shows... Throughout his charitable twin gigs, it was abundantly clear how much the EBRP community and the push to find a cure for the rare, life-threatening condition mean to Vedder. The Vedders cofounded the nonprofit in 2010 with family friends whose son was born with EB. “It’s so special to be playing for a purpose, and the purpose being this incredible mission,” he said. “To have the doctors and researchers and scientists and activists and donors — and the families that have shown us all such courage — to be with you this week has been extremely powerful.” Walking the Seattle walk, Vedder and the extended Pearl Jam family have helped set the tone among our civic-minded homegrown luminaries for using their position to contribute something to the greater community, whether it’s fighting homelessness in Seattle or being part of a worldwide effort to cure what Vedder previously termed an “insidious” disease. It’s a Seattle legacy that artists like Macklemore and Brandi Carlile, as well as organizations like SMASH, continue to build upon in their own ways. And that collective spirit is worth celebrating.
As he did the night before, Vedder seemed to revel in intimately engaging with the audience, which included many familiar faces from the EBRP community in town for a summit preceding the benefit shows... Throughout his charitable twin gigs, it was abundantly clear how much the EBRP community and the push to find a cure for the rare, life-threatening condition mean to Vedder. The Vedders cofounded the nonprofit in 2010 with family friends whose son was born with EB. “It’s so special to be playing for a purpose, and the purpose being this incredible mission,” he said. “To have the doctors and researchers and scientists and activists and donors — and the families that have shown us all such courage — to be with you this week has been extremely powerful.” Walking the Seattle walk, Vedder and the extended Pearl Jam family have helped set the tone among our civic-minded homegrown luminaries for using their position to contribute something to the greater community, whether it’s fighting homelessness in Seattle or being part of a worldwide effort to cure what Vedder previously termed an “insidious” disease. It’s a Seattle legacy that artists like Macklemore and Brandi Carlile, as well as organizations like SMASH, continue to build upon in their own ways. And that collective spirit is worth celebrating.
Review: Eddie Vedder leads intimate, emotional concert in Seattle
October 24, 2023
You would think it’d be tough to distill the buzz of an arena rock show into a quieter (mostly) one-man performance inside a 2,500-capacity theater. But Vedder — and perhaps more importantly, the audience — was up to the task during the first of two packed benefit concerts on his home turf... There was no shortage of gratitude in the air as Vedder discussed EBRP’s work combating epidermolysis bullosa — a rare skin condition that causes intense blistering and can lead to fatal skin cancers among children with severe cases — and the connections made among the community of families, doctors and philanthropists coming together to try to find a cure. The night’s emotional centerpiece came midway through the set when Vedder introduced “my friend, my teacher, my hero,” Eli, a young boy with EB. “I figured all superheroes need a good theme song, so I wrote a little something for him,” Vedder said before a homey “Say Hi.” It was as heartwarming as a circle-time singalong as Eli, who was among the crowd with his family, received a standing ovation after the song. Glancing around the room, a kind-eyed Vedder continued shouting out a number of “EB kids” and families he’s clearly come to know intimately, including a Wisconsin boy, Charlie Knuth, who died this spring at 17. Vedder grew emotional talking about Charlie, whose sense of humor he jokingly likened to a mini Jeff Ross, Vedder’s comedian pal who was the surprise opener for Monday’s show only.
You would think it’d be tough to distill the buzz of an arena rock show into a quieter (mostly) one-man performance inside a 2,500-capacity theater. But Vedder — and perhaps more importantly, the audience — was up to the task during the first of two packed benefit concerts on his home turf... There was no shortage of gratitude in the air as Vedder discussed EBRP’s work combating epidermolysis bullosa — a rare skin condition that causes intense blistering and can lead to fatal skin cancers among children with severe cases — and the connections made among the community of families, doctors and philanthropists coming together to try to find a cure. The night’s emotional centerpiece came midway through the set when Vedder introduced “my friend, my teacher, my hero,” Eli, a young boy with EB. “I figured all superheroes need a good theme song, so I wrote a little something for him,” Vedder said before a homey “Say Hi.” It was as heartwarming as a circle-time singalong as Eli, who was among the crowd with his family, received a standing ovation after the song. Glancing around the room, a kind-eyed Vedder continued shouting out a number of “EB kids” and families he’s clearly come to know intimately, including a Wisconsin boy, Charlie Knuth, who died this spring at 17. Vedder grew emotional talking about Charlie, whose sense of humor he jokingly likened to a mini Jeff Ross, Vedder’s comedian pal who was the surprise opener for Monday’s show only.
EB Research Partnership to host inaugural Venture Into Cures Summit & Dinner in Seattle alongside Eddie Vedder solo shows
September 12, 2023
Eddie Vedder will be playing two intimate concerts in his hometown of Seattle at Benaroya Hall on October 23rd and 24th to bring support to a cause that is near to his heart – EB Research Partnership (EBRP). To support the cause and get access to the show(s), visit give.ebresearch.org/seattle. On October 22nd, ahead of these exclusive Eddie Vedder shows, EBRP will host the inaugural Venture Into Cures Summit and Dinner at Benaroya Hall and Chihuly Garden & Glass Museum. The Summit and Dinner will bring the patient community and world leading thinkers together to discuss how we can accelerate treatments and cures for EB and rare disease at large. These immersive events will celebrate innovative leaders and inspire change makers to accelerate much needed treatments and cures for those battling EB – and the entire rare disease community.
Eddie Vedder will be playing two intimate concerts in his hometown of Seattle at Benaroya Hall on October 23rd and 24th to bring support to a cause that is near to his heart – EB Research Partnership (EBRP). To support the cause and get access to the show(s), visit give.ebresearch.org/seattle. On October 22nd, ahead of these exclusive Eddie Vedder shows, EBRP will host the inaugural Venture Into Cures Summit and Dinner at Benaroya Hall and Chihuly Garden & Glass Museum. The Summit and Dinner will bring the patient community and world leading thinkers together to discuss how we can accelerate treatments and cures for EB and rare disease at large. These immersive events will celebrate innovative leaders and inspire change makers to accelerate much needed treatments and cures for those battling EB – and the entire rare disease community.
Eddie Vedder plans solo Seattle shows for good cause
August 22, 2023
Pearl Jam’s Eddie Vedder will take the stage in Seattle for two performances this October. The shows will take place at 8 p.m. Oct. 23 and 24 at Benaroya Hall. The proceeds will be donated to EB Research Partnership, a nonprofit that researches treatment and cures for epidermolysis bullosa. EB is a group of genetic skin disorders that cause pain, blisters and internal and external wounds. It can be fatal. The Pearl Jam lead singer and his wife, Jill Vedder, co-founded the EB Research Partnership in 2010 with two families that have children with EB, including a family friend. In addition to Vedder’s shows in Seattle, EBRP will hold a Venture into Cures Summit at Benaroya Hall and an award dinner at Chihuly Garden and Glass on Oct. 22 to discuss EB and other rare diseases.
Pearl Jam’s Eddie Vedder will take the stage in Seattle for two performances this October. The shows will take place at 8 p.m. Oct. 23 and 24 at Benaroya Hall. The proceeds will be donated to EB Research Partnership, a nonprofit that researches treatment and cures for epidermolysis bullosa. EB is a group of genetic skin disorders that cause pain, blisters and internal and external wounds. It can be fatal. The Pearl Jam lead singer and his wife, Jill Vedder, co-founded the EB Research Partnership in 2010 with two families that have children with EB, including a family friend. In addition to Vedder’s shows in Seattle, EBRP will hold a Venture into Cures Summit at Benaroya Hall and an award dinner at Chihuly Garden and Glass on Oct. 22 to discuss EB and other rare diseases.
Eddie Vedder Plots Solo Benefit Shows In Seattle
August 21, 2023
Pearl Jam‘s Eddie Vedder will play two rare solo shows on Oct. 23-24 at Seattle’s Benaroya Hall, with all proceeds benefitting EB Research Partnership (EBRP). Vedder and his wife Jill co-founded the organization in 2010 in hopes of identifying treatments and cures for the debilitating skin disease Epidermolysis Bullosa.
Pearl Jam‘s Eddie Vedder will play two rare solo shows on Oct. 23-24 at Seattle’s Benaroya Hall, with all proceeds benefitting EB Research Partnership (EBRP). Vedder and his wife Jill co-founded the organization in 2010 in hopes of identifying treatments and cures for the debilitating skin disease Epidermolysis Bullosa.
2023 EDDIE VEDDER SOLO SHOWS AT BENAROYA HALL
August 21, 2023
Eddie Vedder will return to the solo stage with two shows at Benaroya Hall in Seattle to raise support for EB Research Partnership (EBRP), taking place on Monday, October 23 and Tuesday, October 24. All proceeds from the shows will be donated to EBRP, an organization Jill Vedder and Eddie Vedder founded with a group of parents in 2010 to discover treatments and cures for Epidermolysis Bullosa.
Eddie Vedder will return to the solo stage with two shows at Benaroya Hall in Seattle to raise support for EB Research Partnership (EBRP), taking place on Monday, October 23 and Tuesday, October 24. All proceeds from the shows will be donated to EBRP, an organization Jill Vedder and Eddie Vedder founded with a group of parents in 2010 to discover treatments and cures for Epidermolysis Bullosa.
Partnership puts spotlight on rare disease
August 1, 2023
Adelaide is using its upcoming home match as another opportunity to raise awareness and money for a life-threatening and rare disease affecting children from birth. For the second straight year, the Club is linking with international charity EB Research Partnership to help find a cure for Epidermolysis Bullosa, or EB as it is most commonly known. Crows CEO Tim Silvers said the Club’s players, coaches and staff found inspiration in the courage shown by children suffering from EB. “People impacted by this disease, as well as their loved ones, struggle through adversity on a daily basis,” Silvers said. “Unfortunately, there is no cure and we want to do our part to help find one, and we admire the efforts and progress being made by the EB Research Partnership here and abroad.”
Adelaide is using its upcoming home match as another opportunity to raise awareness and money for a life-threatening and rare disease affecting children from birth. For the second straight year, the Club is linking with international charity EB Research Partnership to help find a cure for Epidermolysis Bullosa, or EB as it is most commonly known. Crows CEO Tim Silvers said the Club’s players, coaches and staff found inspiration in the courage shown by children suffering from EB. “People impacted by this disease, as well as their loved ones, struggle through adversity on a daily basis,” Silvers said. “Unfortunately, there is no cure and we want to do our part to help find one, and we admire the efforts and progress being made by the EB Research Partnership here and abroad.”
Accelerating Impact: EB Research Partnership is Empowering Rare Disease Patients to be in The Driver’s Seat
June 8, 2023
In a world where 95% of rare diseases lack FDA-approved treatments, organizations like EB Research Partnership (EBRP) are making a significant impact. With their groundbreaking work, EBRP not only provides hope to countless individuals and families affected by this devastating disease, but is also paving the way for progress across the wider rare disease health care space. Last year, EB Research won the 2022 Horizon Prize powered by MIT Solve and Horizon Therapeutics, which has been instrumental in propelling their mission to transform the lives of those living with Epidermolysis Bullosa (EB) and inspiring others to join the cause.
In a world where 95% of rare diseases lack FDA-approved treatments, organizations like EB Research Partnership (EBRP) are making a significant impact. With their groundbreaking work, EBRP not only provides hope to countless individuals and families affected by this devastating disease, but is also paving the way for progress across the wider rare disease health care space. Last year, EB Research won the 2022 Horizon Prize powered by MIT Solve and Horizon Therapeutics, which has been instrumental in propelling their mission to transform the lives of those living with Epidermolysis Bullosa (EB) and inspiring others to join the cause.
First Ever Topical Gene Therapy Approved For “Butterfly Disease” Children
May 24, 2023
Patient advocates have spent years raising awareness and funds for research through work with the non-profit EB Research Partnership (EBRP), and its unique Venture Philanthropy model. EBRP leverages concepts from principal investing and applies them towards achieving patient-oriented goals. EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track both potential cures for EB as well as therapies that could affect thousands of other rare diseases. EBRP has been able to generate a more than double return on its investment and reinvest that capital back into more EB projects.
Patient advocates have spent years raising awareness and funds for research through work with the non-profit EB Research Partnership (EBRP), and its unique Venture Philanthropy model. EBRP leverages concepts from principal investing and applies them towards achieving patient-oriented goals. EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track both potential cures for EB as well as therapies that could affect thousands of other rare diseases. EBRP has been able to generate a more than double return on its investment and reinvest that capital back into more EB projects.
Landmark victory for individuals living with DEB and their families, the FDA announced their approval of Krystal Biotech’s VYJUVEK™ for the treatment of Dystrophic Epidermolysis Bullosa (DEB).
May 19, 2023
EB Research Partnership (“EBRP”) invested in Krystal Biotech by way of a private placement after Krystal’s Biotech’s initial public offering in 2017 using EBRP’s Venture Philanthropy model. This is not only the first-ever FDA approved treatment for those battling DEB, but also the first FDA approved topical, redosable gene therapy. 400 million people around the world are affected by a rare disease. 95% of rare diseases lack an FDA approved treatment or cure. Today, DEB warriors around the world cross into the 5% with the approval of Krystal Biotech’s VYJUVEK treatment. VYJUVEK is a non-invasive, topical, redosable gene therapy.
EB Research Partnership (“EBRP”) invested in Krystal Biotech by way of a private placement after Krystal’s Biotech’s initial public offering in 2017 using EBRP’s Venture Philanthropy model. This is not only the first-ever FDA approved treatment for those battling DEB, but also the first FDA approved topical, redosable gene therapy. 400 million people around the world are affected by a rare disease. 95% of rare diseases lack an FDA approved treatment or cure. Today, DEB warriors around the world cross into the 5% with the approval of Krystal Biotech’s VYJUVEK treatment. VYJUVEK is a non-invasive, topical, redosable gene therapy.
Darin Mock Putting Spotlight on Epidermolysis Bullosa
May 10, 2023
On the track, a racecar driver’s hands and feet are continually in motion. Constantly shifting, steering, accelerating and braking in a hot racecar for a long period of time, all while remaining focused and agile, is a challenge for even the most experienced drivers. But what if those repetitive motions and rising temperatures could also cause blisters, pain and scarring? That is the reality of every race for 20-year-old Darin Mock, who has been diagnosed with Epidermolysis Bullosa (EB). Mock has teamed up with the EB Research Partnership (ERBP), which will be featured on his No. 51 Nitro Motorsports Mustang at select events this year beginning at Lime Rock Park in May. EBRP is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa. Mock also recently partnered with Sweet Dreams Mattress and Furniture in his hometown of Mooresville, N.C. to host a very successful EBRP fundraising event.
On the track, a racecar driver’s hands and feet are continually in motion. Constantly shifting, steering, accelerating and braking in a hot racecar for a long period of time, all while remaining focused and agile, is a challenge for even the most experienced drivers. But what if those repetitive motions and rising temperatures could also cause blisters, pain and scarring? That is the reality of every race for 20-year-old Darin Mock, who has been diagnosed with Epidermolysis Bullosa (EB). Mock has teamed up with the EB Research Partnership (ERBP), which will be featured on his No. 51 Nitro Motorsports Mustang at select events this year beginning at Lime Rock Park in May. EBRP is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa. Mock also recently partnered with Sweet Dreams Mattress and Furniture in his hometown of Mooresville, N.C. to host a very successful EBRP fundraising event.
Grateful For Graham Walk To Raise Awareness Of Utica’s Child’s Rare Condition
April 20, 2023
A fundraising and awareness walk is planned later this month to put a spotlight on a very rare condition that a Utica toddler has faced since birth. Epidermolysis Bullosa (EB) is a connective tissue disorder that makes a person's skin extremely sensitive to any abrasion. Graham's parents, Carl and Amanda, joined WIBX 950 this week to explain this rare disorder and how difficult 'typical' childhood experiences can be on a daily basis. "When he falls, like kids do, he has to wear bandages for weeks at a time. It's pretty immediate - the skin will begin blistering and sometimes it falls right off," Carl Robertello said. Grateful For Graham is a fundraising 5k run and walk that will benefit the EB Research Partnership Group, an organization that is working to identify treatments and hopefully someday a cure.
A fundraising and awareness walk is planned later this month to put a spotlight on a very rare condition that a Utica toddler has faced since birth. Epidermolysis Bullosa (EB) is a connective tissue disorder that makes a person's skin extremely sensitive to any abrasion. Graham's parents, Carl and Amanda, joined WIBX 950 this week to explain this rare disorder and how difficult 'typical' childhood experiences can be on a daily basis. "When he falls, like kids do, he has to wear bandages for weeks at a time. It's pretty immediate - the skin will begin blistering and sometimes it falls right off," Carl Robertello said. Grateful For Graham is a fundraising 5k run and walk that will benefit the EB Research Partnership Group, an organization that is working to identify treatments and hopefully someday a cure.
Rare Diseases: Local community rallies around 6-year-old Elodie
April 13, 2023
The Plunge for Elodie is an annual fundraiser benefiting the EB Research Partnership. The organization is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB). A group of friends from Wellesley started the Plunge for Elodie in honor of Elodie Kubik, the daughter of Wellesley High graduate Emily Kubik. After six years, the plunge has raised nearly $2 million to fight EB. Reporter and Producer Erika Tarantal shines a light on the Kubik family, the challenges of navigating a rare skin disease, and the progress that the Plunge has made to fight EB.
The Plunge for Elodie is an annual fundraiser benefiting the EB Research Partnership. The organization is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB). A group of friends from Wellesley started the Plunge for Elodie in honor of Elodie Kubik, the daughter of Wellesley High graduate Emily Kubik. After six years, the plunge has raised nearly $2 million to fight EB. Reporter and Producer Erika Tarantal shines a light on the Kubik family, the challenges of navigating a rare skin disease, and the progress that the Plunge has made to fight EB.
6-Year-Old Enjoys Fundraiser for Her Rare Disease: I Wore 'a Unicorn Onesie and Butterfly Wings!'
April 7, 2023
Born with Recessive Dystrophic Epidermolysis Bullosa (EB), 6-year-old Elodie Kubik does not let the disease stop her from having fun. "I like playing with my friends," Elodie says. She adds, "We play kitchen and dress up. No one stares at me." When Elodie was diagnosed with EB as an infant, her parents were shocked. "It's such a rare disease. We hadn't really heard of it," Elodie's mother Emily says. "My close group of women who I went to high school with wanted to do something. And I really felt like, at that point, the thing that I most wanted was to cure this disease. So they said, 'We will help you do that' and came up with the idea for the plunge as a way to have a fundraiser that was super family friendly." Emily says the way the Plunge for Elodie has grown is unbelievable. "Our goal the first year we thought maybe we'll raise like $15,000, and here we are in year six about to hit the $2 million mark and it's just unbelievable. It's unbelievable."
Born with Recessive Dystrophic Epidermolysis Bullosa (EB), 6-year-old Elodie Kubik does not let the disease stop her from having fun. "I like playing with my friends," Elodie says. She adds, "We play kitchen and dress up. No one stares at me." When Elodie was diagnosed with EB as an infant, her parents were shocked. "It's such a rare disease. We hadn't really heard of it," Elodie's mother Emily says. "My close group of women who I went to high school with wanted to do something. And I really felt like, at that point, the thing that I most wanted was to cure this disease. So they said, 'We will help you do that' and came up with the idea for the plunge as a way to have a fundraiser that was super family friendly." Emily says the way the Plunge for Elodie has grown is unbelievable. "Our goal the first year we thought maybe we'll raise like $15,000, and here we are in year six about to hit the $2 million mark and it's just unbelievable. It's unbelievable."
Taking the ‘Plunge for Elodie’ Sunday in Old Greenwich
March 31, 2023
This Sunday from 9:00 to 11:00am, the EB Research Partnership will hold the 6th annual Plunge For Elodie. EB is short for Epidermolysis Bullosa. In Greenwich, Elodie, who has EB, is a 6 year old student at Riverside School. Her rare disease carries a life expectancy of 30 years, which her family is determined to push out. Elodie’s mother, Emily Kubik, said the entire Riverside School community has mobilized for this event. “Each grade level has a fundraising team,” she said. “The student council is selling bracelets and the riverside rangers are helping to set up and clean up and make sure everything goes smoothly.” On Sunday, teachers and administrators will be plunging alongside students and parents! “We are approaching $2M raised since the event started six years ago,” Emily added. "It is without a doubt one of most successful rare disease fundraisers ever. It is a celebration for the community who has been all-in on supporting Elodie and us since day 1."
This Sunday from 9:00 to 11:00am, the EB Research Partnership will hold the 6th annual Plunge For Elodie. EB is short for Epidermolysis Bullosa. In Greenwich, Elodie, who has EB, is a 6 year old student at Riverside School. Her rare disease carries a life expectancy of 30 years, which her family is determined to push out. Elodie’s mother, Emily Kubik, said the entire Riverside School community has mobilized for this event. “Each grade level has a fundraising team,” she said. “The student council is selling bracelets and the riverside rangers are helping to set up and clean up and make sure everything goes smoothly.” On Sunday, teachers and administrators will be plunging alongside students and parents! “We are approaching $2M raised since the event started six years ago,” Emily added. "It is without a doubt one of most successful rare disease fundraisers ever. It is a celebration for the community who has been all-in on supporting Elodie and us since day 1."
Fundraiser for genetic disorder EB held at Phoenecia restaurant
April 3, 2023
Well known West Seattle philanthropist Jill Vedder is a passionate supporter for research into a relatively rare genetic disorder, Epidermolysis Bullosa or EB. She brought that passion and her two daughters to a fundraising event that was held Sunday April 2 at the Phoenecia Restaurant in the Junction. The event had participants take ice bath plunges (up to 3 minutes long) just outside the restaurant. EB patient Patterson from Seattle was in attendance too, even bravely taking the plunge himself. Both Jill and Eddie Vedder (Pearl Jam), long time West Seattle residents got involved with the cause after Jill's childhood friend had a son who was born with EB. Jill said, "My oldest childhood friend, Ryan Fullmer, he had a son, Mikey, born with EB. We got together to see what we could do. We started Heal EB, and then joined with another family and started the EB Research partnership (EBRP)."
Well known West Seattle philanthropist Jill Vedder is a passionate supporter for research into a relatively rare genetic disorder, Epidermolysis Bullosa or EB. She brought that passion and her two daughters to a fundraising event that was held Sunday April 2 at the Phoenecia Restaurant in the Junction. The event had participants take ice bath plunges (up to 3 minutes long) just outside the restaurant. EB patient Patterson from Seattle was in attendance too, even bravely taking the plunge himself. Both Jill and Eddie Vedder (Pearl Jam), long time West Seattle residents got involved with the cause after Jill's childhood friend had a son who was born with EB. Jill said, "My oldest childhood friend, Ryan Fullmer, he had a son, Mikey, born with EB. We got together to see what we could do. We started Heal EB, and then joined with another family and started the EB Research partnership (EBRP)."
Simply new england: plunge for elodie
March 29, 2023
The 6th Annual Plunge for Elodie kicked off plunges all around the world this weekend to raise awareness for the EB Research Partnership. Plunge for Elodie organizers and EBRP CEO discuss EB, the first Plunge, and the amazing process that this event has seen. The first Plunge for Elodie, named after 6-year-old Elodie who lives with EB, was started by a group of Elodie's mom's friends who wanted to support her and her family. When asked what they could do to help, she told them, "help me cure this disease." 6 years later, the Plunge has grown into an international movement, with 10 satellite plunges around the globe this year, and almost $2 million raised to fund critical EB research via the EB Research Partnership.
The 6th Annual Plunge for Elodie kicked off plunges all around the world this weekend to raise awareness for the EB Research Partnership. Plunge for Elodie organizers and EBRP CEO discuss EB, the first Plunge, and the amazing process that this event has seen. The first Plunge for Elodie, named after 6-year-old Elodie who lives with EB, was started by a group of Elodie's mom's friends who wanted to support her and her family. When asked what they could do to help, she told them, "help me cure this disease." 6 years later, the Plunge has grown into an international movement, with 10 satellite plunges around the globe this year, and almost $2 million raised to fund critical EB research via the EB Research Partnership.
North Carolinians taking plunge to help with treatment of rare disease
March 24, 2023
“I knew there were limitations to the things I couldn’t do. I had to avoid a lot of the birthday parties like ice skating that would tear my ankles up…I would have rings of blisters,” Annie, who was born with EB, said. “I can’t wear Band-Aids. Band-Aids will tear the skin right off.” Forty years later, there is still not much the medical world has come up with. “As far as treatments, there are none,” Annie said. “it’s mainly just trial and error.” Hope is beginning to emerge. Pearl Jam lead singer Eddie Vedder started an organization called with others EB Research Partnership. There are also many friends doing what they can. It started six years ago with a group in Massachusetts doing a fundraiser where they jump into the water and donate to the cause. They call it Plunge for Elodie. It’s named for a little girl who suffers from EB.
“I knew there were limitations to the things I couldn’t do. I had to avoid a lot of the birthday parties like ice skating that would tear my ankles up…I would have rings of blisters,” Annie, who was born with EB, said. “I can’t wear Band-Aids. Band-Aids will tear the skin right off.” Forty years later, there is still not much the medical world has come up with. “As far as treatments, there are none,” Annie said. “it’s mainly just trial and error.” Hope is beginning to emerge. Pearl Jam lead singer Eddie Vedder started an organization called with others EB Research Partnership. There are also many friends doing what they can. It started six years ago with a group in Massachusetts doing a fundraiser where they jump into the water and donate to the cause. They call it Plunge for Elodie. It’s named for a little girl who suffers from EB.
Plunge For Elodie event funds research for rare disease
March 24, 2023
Greensboro resident and Plunge for Elodie organizer, Brenda Keys, discusses EB and the growing Plunge for Elodie movement. Brenda shares that since her daughter, Annie, and young grandson, Brooks, both have EB, this event and the cause are incredibly important to her family. Brenda and her family invite Greensboro residents to join their Plunge for Elodie in honor of Brooks Saturday, March 25th at the Greensboro Aquatic Center!
Greensboro resident and Plunge for Elodie organizer, Brenda Keys, discusses EB and the growing Plunge for Elodie movement. Brenda shares that since her daughter, Annie, and young grandson, Brooks, both have EB, this event and the cause are incredibly important to her family. Brenda and her family invite Greensboro residents to join their Plunge for Elodie in honor of Brooks Saturday, March 25th at the Greensboro Aquatic Center!
5 for Good: Group announces 6th annual Plunge for Elodie in Wellesley
February 28, 2023
The organizers of the Plunge for Elodie announced their sixth annual polar plunge on Rare Disease Day. It will be held on March 26 at Morses Pond in Wellesley. The event benefits the EB Research Partnership. Participants are raising money to support research into treatments for epidermolysis bullosa, or EB. A group of women from Wellesley came up with the idea for the Plunge for Elodie after one of their high school friends, Emily Kubik, had a daughter born with EB, Elodie.
The organizers of the Plunge for Elodie announced their sixth annual polar plunge on Rare Disease Day. It will be held on March 26 at Morses Pond in Wellesley. The event benefits the EB Research Partnership. Participants are raising money to support research into treatments for epidermolysis bullosa, or EB. A group of women from Wellesley came up with the idea for the Plunge for Elodie after one of their high school friends, Emily Kubik, had a daughter born with EB, Elodie.
Plunge for Elodie Fundraising Event Returns for 6th Year, Set to Surpass $2 Million Raised for Epidermolysis Bullosa
February 28, 2023
EB Research Partnership announces the 6th annual Plunge For Elodie scheduled for March 25 - April, 2, 2023. The Plunge for Elodie has evolved from a small hometown fundraiser into a global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the life-threatening rare genetic disorder Epidermolysis Bullosa (EB). 2023 marks a groundbreaking year as the Plunge for Elodie is set to surpass $2M raised for EBRP.
EB Research Partnership announces the 6th annual Plunge For Elodie scheduled for March 25 - April, 2, 2023. The Plunge for Elodie has evolved from a small hometown fundraiser into a global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the life-threatening rare genetic disorder Epidermolysis Bullosa (EB). 2023 marks a groundbreaking year as the Plunge for Elodie is set to surpass $2M raised for EBRP.
Eddie Vedder, Jim Parsons, Tanya Tucker and More Honor Leslie Jordan at Benefit Show: 'He Was Extraordinary'
February 22, 2023
More than 25 performers and special guests celebrate the life of the beloved character actor during the epic Nashville show. "Reportin' for duty" was a favorite Leslie Jordan catchphrase, and a legion of his friends and admirers took it to heart on Sunday night, showing up at Nashville's Grand Ole Opry House to pay homage to the beloved character actor who died, at age 67, last October. "Leslie was a bow-tie-loving Southern boy whose his biggest accomplishment was being unapologetically himself," the show's host, comedian Leanne Morgan, said, kicking off the tribute event, "and I'm sure that he's all smiles knowing that he's brought together the most eclectic group of people to ever grace the Opry stage."
More than 25 performers and special guests celebrate the life of the beloved character actor during the epic Nashville show. "Reportin' for duty" was a favorite Leslie Jordan catchphrase, and a legion of his friends and admirers took it to heart on Sunday night, showing up at Nashville's Grand Ole Opry House to pay homage to the beloved character actor who died, at age 67, last October. "Leslie was a bow-tie-loving Southern boy whose his biggest accomplishment was being unapologetically himself," the show's host, comedian Leanne Morgan, said, kicking off the tribute event, "and I'm sure that he's all smiles knowing that he's brought together the most eclectic group of people to ever grace the Opry stage."
EDDIE VEDDER, MAYIM BIALIK, MORE STARS HONOR LESLIE JORDAN AT EMOTIONAL TRIBUTE CONCERT
February 21, 2023
More than a dozen country music stars took the stage at Nashville's Grand Ole Opry House Sunday night to honor the life and legacy of the late Leslie Jordan. The top-billed musician, however, had little to do with Nashville or country music: it was Pearl Jam frontman Eddie Vedder, making a historic debut on the Opry stage. He told the audience of connecting with Jordan through their work with the EB Research Partnership. All proceeds from Sunday's show went towards the organization, which works to find a cure for Epidermolysis Bullosa.
More than a dozen country music stars took the stage at Nashville's Grand Ole Opry House Sunday night to honor the life and legacy of the late Leslie Jordan. The top-billed musician, however, had little to do with Nashville or country music: it was Pearl Jam frontman Eddie Vedder, making a historic debut on the Opry stage. He told the audience of connecting with Jordan through their work with the EB Research Partnership. All proceeds from Sunday's show went towards the organization, which works to find a cure for Epidermolysis Bullosa.
Ashley McBryde, Eddie Vedder, Tanya Tucker & More Lead Tribute to Leslie Jordan in Nashville: ‘He Was a Light in My Life’
February 20, 2023
A cavalcade of musicians, actors and comedians gathered at the Grand Ole Opry House in Nashville on Sunday evening (Feb. 19) to "report for duty” to celebrate the life and career of the late Leslie Jordan, who died Oct. 24, 2022, at age 67. Many of the artists featured on Company’s Comin’ were on hand to perform and share memories of Jordan during the event, dubbed “Reportin’ For Duty: A Tribute to Leslie Jordan,” which packed the 4,000-seat Opry House Sunday evening. The love in the room for Jordan was palpable, whether performers and speakers had known Jordan for years or only hours. The proceeds from the event went to a cause close to Jordan’s heart, the EB Research Partnership, the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB).
A cavalcade of musicians, actors and comedians gathered at the Grand Ole Opry House in Nashville on Sunday evening (Feb. 19) to "report for duty” to celebrate the life and career of the late Leslie Jordan, who died Oct. 24, 2022, at age 67. Many of the artists featured on Company’s Comin’ were on hand to perform and share memories of Jordan during the event, dubbed “Reportin’ For Duty: A Tribute to Leslie Jordan,” which packed the 4,000-seat Opry House Sunday evening. The love in the room for Jordan was palpable, whether performers and speakers had known Jordan for years or only hours. The proceeds from the event went to a cause close to Jordan’s heart, the EB Research Partnership, the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB).
Leslie Jordan honored by Eddie Vedder and more at Nashville tribute concert
February 20, 2023
More than a dozen country music stars took the stage at Nashville's Grand Ole Opry House Sunday night to honor the late Leslie Jordan — but it was a comedian from New York City who summed up the spirit of the evening clearer than anyone else. Robyn Schall was telling the audience — a sold-out crowd at the 4,000-seat venue — about making Instagram videos with the comedic actor in recent years. "So we'd make a video, and then he would call me and say, 'Hey, Robyn, we're gonna post this. What's the best time to do it, so you shine the best?' I think it's so fitting (that) a tribute night to Leslie Jordan is just all of his friends, shining so bright." All proceeds from Sunday's show went towards EBRP, which works to find a cure for Epidermolysis Bullosa, a family of genetic disorders that affect the skin.
More than a dozen country music stars took the stage at Nashville's Grand Ole Opry House Sunday night to honor the late Leslie Jordan — but it was a comedian from New York City who summed up the spirit of the evening clearer than anyone else. Robyn Schall was telling the audience — a sold-out crowd at the 4,000-seat venue — about making Instagram videos with the comedic actor in recent years. "So we'd make a video, and then he would call me and say, 'Hey, Robyn, we're gonna post this. What's the best time to do it, so you shine the best?' I think it's so fitting (that) a tribute night to Leslie Jordan is just all of his friends, shining so bright." All proceeds from Sunday's show went towards EBRP, which works to find a cure for Epidermolysis Bullosa, a family of genetic disorders that affect the skin.
Your Guide to Venture Philanthropy with EB Research CEO Michael Hund
January 26, 2023
In this episode of The Official Do Good Better podcast, host Patrick Kirby and EBRP CEO Michael Hund discuss the bold mission of EB Research Partnership, and how EBRP's innovative venture philanthropy model is accelerating that mission to cure EB and lead the way for other genetic rare diseases.
In this episode of The Official Do Good Better podcast, host Patrick Kirby and EBRP CEO Michael Hund discuss the bold mission of EB Research Partnership, and how EBRP's innovative venture philanthropy model is accelerating that mission to cure EB and lead the way for other genetic rare diseases.
Eddie Vedder, Maren Morris To Salute Leslie Jordan At Nashville Tribute
January 10, 2023
Pearl Jam’s Eddie Vedder, Maren Morris, Brothers Osborne, Billy Strings, Lukas Nelson, and Brittney Spencer will assemble for Reportin’ for Duty: A Tribute to Leslie Jordan on Feb. 19 at the Grand Ole Opry House in Nashville. Jim Parsons, Anthony Mason, Mayim Bialik, Cheyenne Jackson, Max Greenfield, Margaret Cho, Robyn Schall, and Leanne Morgan will also appear at the event, all proceeds from which will benefit the EB Research Partnership, championed by Vedder and his wife Jill.
Pearl Jam’s Eddie Vedder, Maren Morris, Brothers Osborne, Billy Strings, Lukas Nelson, and Brittney Spencer will assemble for Reportin’ for Duty: A Tribute to Leslie Jordan on Feb. 19 at the Grand Ole Opry House in Nashville. Jim Parsons, Anthony Mason, Mayim Bialik, Cheyenne Jackson, Max Greenfield, Margaret Cho, Robyn Schall, and Leanne Morgan will also appear at the event, all proceeds from which will benefit the EB Research Partnership, championed by Vedder and his wife Jill.
Rock ‘n’ Roll Inspires Philanthropy
January 9, 2023
Dr. Jeff Heddles began his journey as a focal donor to help find a cure for a rare childhood skin disease while attending a Pearl Jam Concert in California the fall of 2021. On stage alongside the rock ‘n’ roll band’s lead singer Eddie Vedder was a child about seven years old playing a tambourine. “He was having a ball on stage but sadly was wrapped in bandages,” Heddles recalls. “Seeing him and his performance inspired me to learn more about his condition.”
Dr. Jeff Heddles began his journey as a focal donor to help find a cure for a rare childhood skin disease while attending a Pearl Jam Concert in California the fall of 2021. On stage alongside the rock ‘n’ roll band’s lead singer Eddie Vedder was a child about seven years old playing a tambourine. “He was having a ball on stage but sadly was wrapped in bandages,” Heddles recalls. “Seeing him and his performance inspired me to learn more about his condition.”
Model, 24, with Rare Skin Disease Bares Scars to Raise Awareness: 'I Choose to Show the Body I Was Given'
January 4, 2023
Lucy Beall was born with epidermolysis bullosa, a rare genetic disorder that affects roughly 200 people in the U.S. each year and causes painful blisters at the slightest touch. Expected to die at infancy, Beall, now 24, defies all odds and serves as a passionate and outspoken advocate for herself and others with the condition. "I grew up knowing that my condition didn't just mean a more difficult life, but possibly a shorter one, and it was a very heavy burden," Beall tells PEOPLE. "I want people to see that I'm so much more than just my scars."
Lucy Beall was born with epidermolysis bullosa, a rare genetic disorder that affects roughly 200 people in the U.S. each year and causes painful blisters at the slightest touch. Expected to die at infancy, Beall, now 24, defies all odds and serves as a passionate and outspoken advocate for herself and others with the condition. "I grew up knowing that my condition didn't just mean a more difficult life, but possibly a shorter one, and it was a very heavy burden," Beall tells PEOPLE. "I want people to see that I'm so much more than just my scars."
unifying healthcare, health research, and patients through data: EBRP CEO, MICHAEL HUND, AT RE:INVENT 2022
December 8, 2022
EBRP CEO, Michael Hund, joins Amazon Web Services at their 2022 re:Invent conference to discuss unifying healthcare, health research, and patients through data. He speaks about the first-of-its-kind data platform that EBRP is developing that will guide patients to the nearest doctors, treatment clinics, clinical trials, and patient support groups. Similar to the way a GPS navigates you to your destination, but where right turns are the right treatment for the right patient at the right time, and the destination is a cure.
EBRP CEO, Michael Hund, joins Amazon Web Services at their 2022 re:Invent conference to discuss unifying healthcare, health research, and patients through data. He speaks about the first-of-its-kind data platform that EBRP is developing that will guide patients to the nearest doctors, treatment clinics, clinical trials, and patient support groups. Similar to the way a GPS navigates you to your destination, but where right turns are the right treatment for the right patient at the right time, and the destination is a cure.
ebrp announces leadership changes
December 8, 2022
EB Research Partnership (EBRP) announces that Co-Founders, Alex and Jamie Silver, are shifting the focus of their efforts to later stage research specific to Recessive Dystrophic Epidermolysis Bullosa and have stepped back from their active roles at EBRP. Since EBRP's inception and until July of 2022, Alex served as EBRP's Chairman & Executive Board Member, and Jamie has served as an Executive Board Member & Secretary until November 2022.
EB Research Partnership (EBRP) announces that Co-Founders, Alex and Jamie Silver, are shifting the focus of their efforts to later stage research specific to Recessive Dystrophic Epidermolysis Bullosa and have stepped back from their active roles at EBRP. Since EBRP's inception and until July of 2022, Alex served as EBRP's Chairman & Executive Board Member, and Jamie has served as an Executive Board Member & Secretary until November 2022.
Billie Eilish, Will Ferrell, Tom Holland, John Legend, Chris Pratt, Keanu Reeves, Olivia Rodrigo, Emma Watson, and more, help lead year 3 of Venture Into Cures which in total has raised over $6 million for EB Research Partnership, to find a cure for Epidermolysis Bullosa
DECEMBER 1, 2022
On November 20, EB Research Partnership (EBRP) presented the third annual Venture Into Cures, an inspiring virtual event featuring moving stories about individuals and families living with Epidermolysis Bullosa (EB). Co-founders Eddie and Jill Vedder, along with their daughters Olivia and Harper Vedder, were joined by a lineup of celebrity friends and guests to raise over $1.3 million for EBRP, bringing the 3 year total raised via Venture Into Cures to more than $6 million, moving the organization closer to finding a cure for EB and leading the way for other rare diseases. More than 75,000 people tuned in from over 70 countries to watch the special.
On November 20, EB Research Partnership (EBRP) presented the third annual Venture Into Cures, an inspiring virtual event featuring moving stories about individuals and families living with Epidermolysis Bullosa (EB). Co-founders Eddie and Jill Vedder, along with their daughters Olivia and Harper Vedder, were joined by a lineup of celebrity friends and guests to raise over $1.3 million for EBRP, bringing the 3 year total raised via Venture Into Cures to more than $6 million, moving the organization closer to finding a cure for EB and leading the way for other rare diseases. More than 75,000 people tuned in from over 70 countries to watch the special.
CLOUD TRANSFORMATION
NOVEMBER 22, 2022
A pervasive issue for EB patients and their families is data management. Patient information and medical research are siloed, meaning researchers and individuals have a hard time accessing current information on the disorder. EBRP’s leadership determined that one of their objectives was to use cloud tools to combine this data together on one platform, making it easier for patients and their families to access educational resources and connect with other patients, doctors, and clinical trials. This led EBRP to build a cloud-based platform that guides patients to the nearest doctors, research studies, treatment clinics, trials of new drugs, and patient support groups—similar to the way that GPS navigates you to your destination.
A pervasive issue for EB patients and their families is data management. Patient information and medical research are siloed, meaning researchers and individuals have a hard time accessing current information on the disorder. EBRP’s leadership determined that one of their objectives was to use cloud tools to combine this data together on one platform, making it easier for patients and their families to access educational resources and connect with other patients, doctors, and clinical trials. This led EBRP to build a cloud-based platform that guides patients to the nearest doctors, research studies, treatment clinics, trials of new drugs, and patient support groups—similar to the way that GPS navigates you to your destination.
KEANU REEVES, BILLIE EILISH AND TOM HOLLAND AMONG STARS CONFIRMED FOR VENURE INTO CURES FUNDRAISER
NOVEMBER 17, 2022
EBRP has rallied a slew of stars to appear during the third annual Venture Into Cures, an online fundraiser scheduled for Nov. 20. The event will feature appearances by Jonathan Brown, Dana Carvey, Billie Eilish, Will Ferrell, FINNEAS, Jack Harlow, Tom Holland, Joe Jonas, Kermit the Frog, Macklemore, Lamorne Morris, Chris Pratt, Keanu Reeves, Olivia Rodrigo, Molly Shannon, Hannah Simone, David Spade, Emma Watson, Venus Williams and more, with performances by Broken Social Scene, John Legend, Joy Oladokun, Red Hot Chili Peppers, Lauren Spencer-Smith and others.
EBRP has rallied a slew of stars to appear during the third annual Venture Into Cures, an online fundraiser scheduled for Nov. 20. The event will feature appearances by Jonathan Brown, Dana Carvey, Billie Eilish, Will Ferrell, FINNEAS, Jack Harlow, Tom Holland, Joe Jonas, Kermit the Frog, Macklemore, Lamorne Morris, Chris Pratt, Keanu Reeves, Olivia Rodrigo, Molly Shannon, Hannah Simone, David Spade, Emma Watson, Venus Williams and more, with performances by Broken Social Scene, John Legend, Joy Oladokun, Red Hot Chili Peppers, Lauren Spencer-Smith and others.
EDDIE AND JILL VEDDER DRAFT MUSIC, SPORTS, FILM STARS FOR VENTURE INTO CURES LIVESTREAM
NOVEMBER 3, 2022
Eddie and Jill Vedder will once again lead a host of music, film, and sports stars at the virtual fundraiser Venture Into Cures, which will take place Nov. 20. The event raises funds for EBRP, which is working to find a cure for the genetic skin disorder Epidermolysis Bullosa (EB). EBRP was founded by the Vedders in tandem with a community of parents of people suffering from EB, which causes extremely sensitive and often treatment-resistant skin that must be carefully bandaged every day.
Eddie and Jill Vedder will once again lead a host of music, film, and sports stars at the virtual fundraiser Venture Into Cures, which will take place Nov. 20. The event raises funds for EBRP, which is working to find a cure for the genetic skin disorder Epidermolysis Bullosa (EB). EBRP was founded by the Vedders in tandem with a community of parents of people suffering from EB, which causes extremely sensitive and often treatment-resistant skin that must be carefully bandaged every day.
Billie Eilish, Will Ferrell, Tom Holland, Joe Jonas, John Legend, Chris Pratt, Olivia Rodrigo, Venus Williams, and more, join Jill and Eddie Vedder for the third annual Venture into Cures benefit to find a cure for Epidermolysis Bullosa
NOVEMBER 3, 2022
EB Research Partnership (EBRP) announces the initial celebrity lineup for the third annual Venture Into Cures, an inspiring, virtual fundraising and awareness event airing November 20, 2022, at 4 p.m. ET/ 1 p.m. PT. EBRP co-founders Jill and Eddie Vedder, and their daughters Olivia and Harper Vedder, will be joined by a lineup of celebrity friends.
EB Research Partnership (EBRP) announces the initial celebrity lineup for the third annual Venture Into Cures, an inspiring, virtual fundraising and awareness event airing November 20, 2022, at 4 p.m. ET/ 1 p.m. PT. EBRP co-founders Jill and Eddie Vedder, and their daughters Olivia and Harper Vedder, will be joined by a lineup of celebrity friends.
Rare Disease; Rarer Organization: How EB Research Partnership Drives Rare Disease Research
OCTOBER 26, 2022
In this episode of OnAir: Health Care, Akin Gump senior policy advisor Matthew Hittle and consultant Dr. Mario Ramirez welcome Michael Hund of EB Research Partnership. Among other topics, they discuss the severe challenges of the disease EB, or epidermolysis bullosa, the venture philanthropy model of funding research into rare diseases, and leading technologies in treating EB and other genetic diseases.
In this episode of OnAir: Health Care, Akin Gump senior policy advisor Matthew Hittle and consultant Dr. Mario Ramirez welcome Michael Hund of EB Research Partnership. Among other topics, they discuss the severe challenges of the disease EB, or epidermolysis bullosa, the venture philanthropy model of funding research into rare diseases, and leading technologies in treating EB and other genetic diseases.
AN INNOVATIVE APPROACH TO FUNDING RARE DISEASE RESEARCH - HEATHER AND RYAN FULLMER, CO-FOUNDERS OF EB RESEARCH PARTNERSHIP
OCTOBER 26, 2022
Tune in to learn how the “venture philanthropy” model EBRP uses differs from typical investing, and hear about important fundraising events for EB including Venture Into Cures hosted by Spiderman actor Tom Holland. And be sure to stay tuned to hear their advice to medical providers on the importance of building rapport with patient families, and taking an interdisciplinary approach to treating rare disorders.
Tune in to learn how the “venture philanthropy” model EBRP uses differs from typical investing, and hear about important fundraising events for EB including Venture Into Cures hosted by Spiderman actor Tom Holland. And be sure to stay tuned to hear their advice to medical providers on the importance of building rapport with patient families, and taking an interdisciplinary approach to treating rare disorders.
EB RESEARCH PARTNERSHIP RECEIVES 2022 HORIZON PRIZE, POWERED BY MIT SOLVE
SEPTEMBER 21, 2022
Horizon Therapeutics, in collaboration with MIT Solve, a marketplace for social impact innovation, is proud to announce the winning solution of this year’s Horizon Prize: Patient-Driven Data Platform for Rare Disease by EB Research Partnership. EB Research Partnership will receive $150,000 in funding to continue improving the quality of life of people who have been diagnosed with EB, a family of life-threatening rare genetic disorders that affect the body's largest organ: the skin.
Horizon Therapeutics, in collaboration with MIT Solve, a marketplace for social impact innovation, is proud to announce the winning solution of this year’s Horizon Prize: Patient-Driven Data Platform for Rare Disease by EB Research Partnership. EB Research Partnership will receive $150,000 in funding to continue improving the quality of life of people who have been diagnosed with EB, a family of life-threatening rare genetic disorders that affect the body's largest organ: the skin.
VENTURE PHILANTHROPY EXPEDITES INNOVATION TO CURE EB
AUGUST 31, 2022
In each episode of Break Everything... in Healthcare, healthcare leaders dream BIG about paradigm-shifting ways they want to make the Healthcare system more compassionate, effective, and efficient. In this episode, Lisa interviews Michael Hund, MBA, the CEO of EB Research Partnership, a game-changing medical research organization dedicated to curing the life-threatening genetic skin disease Epidermolysis Bullosa (EB) and pioneering the innovative business model of Venture Philanthropy.
In each episode of Break Everything... in Healthcare, healthcare leaders dream BIG about paradigm-shifting ways they want to make the Healthcare system more compassionate, effective, and efficient. In this episode, Lisa interviews Michael Hund, MBA, the CEO of EB Research Partnership, a game-changing medical research organization dedicated to curing the life-threatening genetic skin disease Epidermolysis Bullosa (EB) and pioneering the innovative business model of Venture Philanthropy.
HARVARD BUSINESS SCHOOL: HOW EBRP IS VENTURING INTO CURES
AUGUST 04, 2022
Harvard Business School's Kraft Precision Medicine Accelerator details 4 case studies that exhibit how EBRP is using an innovative venture philanthropy model to cure EB by 2030 and to lead the way for other rare diseases, from realizing a 6x ROI from traditional venture philanthropy to spinning out technology and forming a new company.
Harvard Business School's Kraft Precision Medicine Accelerator details 4 case studies that exhibit how EBRP is using an innovative venture philanthropy model to cure EB by 2030 and to lead the way for other rare diseases, from realizing a 6x ROI from traditional venture philanthropy to spinning out technology and forming a new company.
Adelaide Crows & EBRP Announce Partnership
JUNE 26, 2022
The Adelaide Football Club is partnering with an international charity to raise awareness and funds for a life-threatening disease affecting children from birth. The Crows will use their Round 16 home game against Melbourne to support the EB Research Partnership in the hope of helping to find a cure. Epidermolysis Bullosa, or EB as its commonly known, attacks the body’s largest organ – the skin – as well as the connective tissue and internal organs.
The Adelaide Football Club is partnering with an international charity to raise awareness and funds for a life-threatening disease affecting children from birth. The Crows will use their Round 16 home game against Melbourne to support the EB Research Partnership in the hope of helping to find a cure. Epidermolysis Bullosa, or EB as its commonly known, attacks the body’s largest organ – the skin – as well as the connective tissue and internal organs.
Social innovation summit 2022 | adaptability & next generation transformation
JUNE 11, 2022
CEO Michael Hund discusses EBRP's big, bold, audacious goal to cure the devastating and life-threatening rare genetic disease that is EB and how the organization's innovative patient-driven data platform will help to accelerate towards achieving that goal.
CEO Michael Hund discusses EBRP's big, bold, audacious goal to cure the devastating and life-threatening rare genetic disease that is EB and how the organization's innovative patient-driven data platform will help to accelerate towards achieving that goal.
Saving the 'Butterfly Children:' Gene Therapy Helps Heal Deadly Blistering Condition
MARCH 29, 2022
"Many people forget your skin is your largest organ. So when your skin doesn't function like people with healthy skin, every aspect of your life is impacted," says EBRP CEO Michael Hund to HealthDay. This article reports on the potential for Krystal Biotech's Vyjuvek, a topical gene therapy, to become the first FDA-approved treatment for individuals with Epidermolysis Bullosa (EB).
"Many people forget your skin is your largest organ. So when your skin doesn't function like people with healthy skin, every aspect of your life is impacted," says EBRP CEO Michael Hund to HealthDay. This article reports on the potential for Krystal Biotech's Vyjuvek, a topical gene therapy, to become the first FDA-approved treatment for individuals with Epidermolysis Bullosa (EB).
Announcing the 5th Annual Virtual Plunge for Elodie March 26 - 27, 2022
MARCH 10, 2022
The 5th annual Plunge For Elodie is a global movement inviting participants to plunge into freezing waters, whether virtually or in person, to fundraise for the life-threatening rare genetic disorder Epidermolysis Bullosa (EB). 2022 marks a groundbreaking year as the Plunge for Elodie is set to surpass $1 million raised.
The 5th annual Plunge For Elodie is a global movement inviting participants to plunge into freezing waters, whether virtually or in person, to fundraise for the life-threatening rare genetic disorder Epidermolysis Bullosa (EB). 2022 marks a groundbreaking year as the Plunge for Elodie is set to surpass $1 million raised.
Michael Hund of EB Research Partnership: 5 Things You Need To Know To Successfully Lead A Nonprofit Organization
FEBRUARY 27, 2022
EB Research Partnership CEO Michael Hund spoke to Yitzi Weiner of Authority Magazine via Medium about the "5 Things You Need To Know To Successfully Lead A Nonprofit Organization" for their individuals and organizations making an important social impact series.
EB Research Partnership CEO Michael Hund spoke to Yitzi Weiner of Authority Magazine via Medium about the "5 Things You Need To Know To Successfully Lead A Nonprofit Organization" for their individuals and organizations making an important social impact series.
Announcing the winners of the 2021-2022 AWS Imagine Grant
NOVEMBER 30, 2021
EB Research Partnership was selected as an AWS Imagine Grant winner for the "Go Further, Faster" award, receiving up to $150,000 in unrestricted funding, up to $100,000 in AWS Promotional Credit, and engagement with AWS technical specialists. The award will support development of EBRP's first-of-its-kind collaborative data platform to unites scientists, industry, and patients to accelerate outcomes in Epidermolysis Bullosa research that will also benefit the field of rare disease research.
EB Research Partnership was selected as an AWS Imagine Grant winner for the "Go Further, Faster" award, receiving up to $150,000 in unrestricted funding, up to $100,000 in AWS Promotional Credit, and engagement with AWS technical specialists. The award will support development of EBRP's first-of-its-kind collaborative data platform to unites scientists, industry, and patients to accelerate outcomes in Epidermolysis Bullosa research that will also benefit the field of rare disease research.
Ed Sheeran, Selena Gomez Join Virtual Fundraiser Venture Into Cures Lineup
NOVEMBER 04, 2021
EBRP is finalizing boldfaced name participants for its second annual Venture Into Cures virtual fundraiser. Scheduled for Nov. 18 and hosted by Tom Holland, the event raises money while shining a spotlight on individuals and families that are dealing with epidermolysis bullosa. Commonly called EB, it’s a rare genetic disorder (with no treatment or cure) that affects the skin, causing it to tear, blister and/or shear, which causes severe pain, disfigurement and wounds that sometimes never heal.
EBRP is finalizing boldfaced name participants for its second annual Venture Into Cures virtual fundraiser. Scheduled for Nov. 18 and hosted by Tom Holland, the event raises money while shining a spotlight on individuals and families that are dealing with epidermolysis bullosa. Commonly called EB, it’s a rare genetic disorder (with no treatment or cure) that affects the skin, causing it to tear, blister and/or shear, which causes severe pain, disfigurement and wounds that sometimes never heal.
Tom Holland will serve as host for Venture Into Cures, a virtual event supporting EBRP'S mission to find a cure for EB, featuring EBRP Co-Founders Jill and Eddie Vedder along with Brandi Carlile, Selena Gomez, The Jonas Brothers, Pearl Jam, Ed Sheeran and more
NOVEMBER 04, 2021
EBRP announces the 2nd annual Venture Into Cures, an inspiring virtual fundraising and awareness event airing November 18, 2021 at 8pm ET. Hosted by actor Tom Holland, the show will feature moving stories about individuals and families living with EB alongside appearances and performances from a lineup of celebrity supporters.
EBRP announces the 2nd annual Venture Into Cures, an inspiring virtual fundraising and awareness event airing November 18, 2021 at 8pm ET. Hosted by actor Tom Holland, the show will feature moving stories about individuals and families living with EB alongside appearances and performances from a lineup of celebrity supporters.
Venture philanthropy Done Right
SEPTEMBER 21, 2021
Harvard Business School's Kraft Precision Medicine Accelerator recognizes that "developing treatments, conducting clinical research, and driving cures requires serious capital." EBRP's Venture Philanthropy model is featured as an innovative method of raising the significant funds to accelerate treatments and cures for EB. Read this white paper to learn more about how EBRP invests in an EB-free reality.
Harvard Business School's Kraft Precision Medicine Accelerator recognizes that "developing treatments, conducting clinical research, and driving cures requires serious capital." EBRP's Venture Philanthropy model is featured as an innovative method of raising the significant funds to accelerate treatments and cures for EB. Read this white paper to learn more about how EBRP invests in an EB-free reality.
EB Research Partnership Receives $150,000 Donation from ELONGATE to Launch the #CryptoForCures Fund to Cure Epidermolysis Bullosa
MAY 17, 2021
EB Research Partnership (EBRP) announced a $150,000 donation from Elongate, a cryptocurrency token focused on charitable giving, as the inaugural gift for EBRP's #CryptoForCures Fund, establishing Elongate as the Founding Member. #CryptoForCures aims to raise $1 million in cryptocurrency donations for groundbreaking EB research by the end of 2021. Cryptocurrency donations for #CryptoForCures can be made here.
EB Research Partnership (EBRP) announced a $150,000 donation from Elongate, a cryptocurrency token focused on charitable giving, as the inaugural gift for EBRP's #CryptoForCures Fund, establishing Elongate as the Founding Member. #CryptoForCures aims to raise $1 million in cryptocurrency donations for groundbreaking EB research by the end of 2021. Cryptocurrency donations for #CryptoForCures can be made here.
Leslie Jordan goes country with Eddie Vedder to raise money for Epidermolysis Bullosa research: 'The worst disease that no one knows anything about'
MARCH 18, 2021
Beloved comedian, actor, and social media sensation Leslie Jordan has partnered with EBRP co-founder Eddie Vedder to directly benefit EBRP. Exclusive signed collectibles from Jordan's new Company’s Comin’ album are available for auction.
Beloved comedian, actor, and social media sensation Leslie Jordan has partnered with EBRP co-founder Eddie Vedder to directly benefit EBRP. Exclusive signed collectibles from Jordan's new Company’s Comin’ album are available for auction.
Despite the pandemic and the cold, Elodie's champions plunge into Morses Pond
MARCH 15, 2021
Despite the pandemic cancelling 2020's Plunge For Elodie, a group of dedicated supporters went to Morses Pond in Wellesley, MA, the site of the original event, to take the plunge on March 13. The Plunge For Elodie has raised over $700,000 to date for research to find a cure for EB.
Despite the pandemic cancelling 2020's Plunge For Elodie, a group of dedicated supporters went to Morses Pond in Wellesley, MA, the site of the original event, to take the plunge on March 13. The Plunge For Elodie has raised over $700,000 to date for research to find a cure for EB.
5 for Good: Virtual polar plunge fights rare genetic condition
MARCH 15, 2021
"I promised her that I would keep fighting for EB, for her friends,” says Katie Ramsey to WCVB TV Boston of her beautiful daughter Sophia, who sadly passed away after battling EB in May 2020 at just one-year-old. This year's annual Plunge For Elodie, a polar plunge benefiting EB research, is being held in Sophia's memory. Sophia's family started the organization Sophia's Hope to keep her memory alive and further EB research to find a cure. Along with local companies Trans National Group and Lookout Farm, Sophia's Hope has raised a $30,000 matching fund for the Plunge for Elodie.
"I promised her that I would keep fighting for EB, for her friends,” says Katie Ramsey to WCVB TV Boston of her beautiful daughter Sophia, who sadly passed away after battling EB in May 2020 at just one-year-old. This year's annual Plunge For Elodie, a polar plunge benefiting EB research, is being held in Sophia's memory. Sophia's family started the organization Sophia's Hope to keep her memory alive and further EB research to find a cure. Along with local companies Trans National Group and Lookout Farm, Sophia's Hope has raised a $30,000 matching fund for the Plunge for Elodie.
Monroe couple fights EB to keep daughter Sophia’s memory alive
MARCH 14, 2021
Katie and Tim Ramsey are fighting for a cure for EB in memory of their daughter, Sophia, who unfortunately passed away from complications of Junctional EB last May at just one-year-old. The Ramsey's started Sophia's Hope, an organization dedicated to keeping Sophia's legacy alive by supporting EB research, and are supporting the Plunge For Elodie, held in Sophia's honor this year.
Katie and Tim Ramsey are fighting for a cure for EB in memory of their daughter, Sophia, who unfortunately passed away from complications of Junctional EB last May at just one-year-old. The Ramsey's started Sophia's Hope, an organization dedicated to keeping Sophia's legacy alive by supporting EB research, and are supporting the Plunge For Elodie, held in Sophia's honor this year.
Announcing the 4th Annual Virtual Plunge for Elodie, Raising Critical Funds for EB Research
MARCH 9, 2021
EBRP announces the 4th annual Plunge For Elodie, an event where participants plunge into freezing waters to fundraise for research aimed at discovering therapies for EB. For the first time, Plunge for Elodie is a virtual event, encouraging global engagement as participants are asked to plunge from their respective locations and share videos to social media by March 28, 2021. More information on how to donate and get involved can be found at www.plungeforelodie.org.
EBRP announces the 4th annual Plunge For Elodie, an event where participants plunge into freezing waters to fundraise for research aimed at discovering therapies for EB. For the first time, Plunge for Elodie is a virtual event, encouraging global engagement as participants are asked to plunge from their respective locations and share videos to social media by March 28, 2021. More information on how to donate and get involved can be found at www.plungeforelodie.org.
Hear Eddie Vedder’s Acoustic Cover of Bruce Springsteen’s ‘Growin’ Up’
DECEMBER 26, 2020
Eddie Vedder released Matter of Time EP including two songs he created in honor of those living with Epidermolysis Bullosa, "Matter of Time" and "Say Hi". Click below to read more and listen to the tracks.
Eddie Vedder released Matter of Time EP including two songs he created in honor of those living with Epidermolysis Bullosa, "Matter of Time" and "Say Hi". Click below to read more and listen to the tracks.
Jill and Eddie Vedder and friends raise more than $1.8 million for EB Research Partnership, to find a cure for Epidermolysis Bullosa
NOVEMBER 23, 2020
Last Wednesday, November 18, EB Research Partnership (EBRP) co-founders Jill and Eddie Vedder presented Venture Into Cures, an inspiring virtual event featuring moving stories about individuals and families living with Epidermolysis Bullosa (EB). United by a lineup of celebrity friends, the event raised over $1.8 million for EBRP, helping the organization move closer to finding a cure for EB and leading the way for other rare diseases.
Last Wednesday, November 18, EB Research Partnership (EBRP) co-founders Jill and Eddie Vedder presented Venture Into Cures, an inspiring virtual event featuring moving stories about individuals and families living with Epidermolysis Bullosa (EB). United by a lineup of celebrity friends, the event raised over $1.8 million for EBRP, helping the organization move closer to finding a cure for EB and leading the way for other rare diseases.
Eddie Vedder Releases Two Solo Singles ‘Matter of Time,’ ‘Say Hi’
NOVEMBER 19, 2020
Eddie Vedder released two new singles, "Say Hi" and "Matter of Time", after performing them at Venture Into Cures, a virtual event to benefit EB Research Partnership. Both songs are inspired by individuals with EB. Click below to read more and hear the new music.
Eddie Vedder released two new singles, "Say Hi" and "Matter of Time", after performing them at Venture Into Cures, a virtual event to benefit EB Research Partnership. Both songs are inspired by individuals with EB. Click below to read more and hear the new music.
Eddie Vedder to debut new music and video for Venture Into Cures, a virtual event supporting EB Research Partnership
NOVEMBER 17, 2020
Airing November 18, 2020 at 8 p.m. ET, Venture Into Cures, a benefit for EB Research Partnership, will feature inspiring stories about individuals and families living with Epidermolysis Bullosa (EB), along with special appearances and performances from a lineup of celebrity friends. During the show, Eddie Vedder will premiere two new songs: "Say Hi", inspired by a young person living with EB, and "Matter of Time", including a new music video in collaboration with New York Times bestselling author and award winning illustrator Jeff Lemire. The show will also feature an exclusive debut of singer/songwriter Andra Day's moving rendition of Eddie Vedder's "Longing to Belong", and Maroon 5 lead singer Adam Levine's performance of Pearl Jam's "Elderly Woman Behind the Counter in a Small Town".
Airing November 18, 2020 at 8 p.m. ET, Venture Into Cures, a benefit for EB Research Partnership, will feature inspiring stories about individuals and families living with Epidermolysis Bullosa (EB), along with special appearances and performances from a lineup of celebrity friends. During the show, Eddie Vedder will premiere two new songs: "Say Hi", inspired by a young person living with EB, and "Matter of Time", including a new music video in collaboration with New York Times bestselling author and award winning illustrator Jeff Lemire. The show will also feature an exclusive debut of singer/songwriter Andra Day's moving rendition of Eddie Vedder's "Longing to Belong", and Maroon 5 lead singer Adam Levine's performance of Pearl Jam's "Elderly Woman Behind the Counter in a Small Town".
Jill and Eddie Vedder come together with celebrity friends for ‘Venture Into Cures,’ a virtual event supporting EB Research Partnership’s mission to find a cure for Epidermolysis Bullosa
NOVEMBER 10, 2020
EBRP announces Venture Into Cures, an inspiring virtual event led by Co-Founders Jill and Eddie Vedder airing November 18, 2020 at 8 p.m. ET. The show will feature uplifting stories about individuals and families living with EB alongside appearances and performances from celebrity friends to educate viewers about EB and raise critical funds for research toward a cure for EB and other rare diseases. Venture Into Cures will include memorable and moving moments, including the premiere of new songs by Eddie Vedder, inspired by EB families: the debut of “Matter of Time” and a new version of “Say Hi”. Venture Into Cures will stream globally for free at www.ventureintocures.org, www.pearljam.com, and EBRP, Pearl Jam, Eddie Vedder, and Nugs.net Facebook and YouTube pages.
EBRP announces Venture Into Cures, an inspiring virtual event led by Co-Founders Jill and Eddie Vedder airing November 18, 2020 at 8 p.m. ET. The show will feature uplifting stories about individuals and families living with EB alongside appearances and performances from celebrity friends to educate viewers about EB and raise critical funds for research toward a cure for EB and other rare diseases. Venture Into Cures will include memorable and moving moments, including the premiere of new songs by Eddie Vedder, inspired by EB families: the debut of “Matter of Time” and a new version of “Say Hi”. Venture Into Cures will stream globally for free at www.ventureintocures.org, www.pearljam.com, and EBRP, Pearl Jam, Eddie Vedder, and Nugs.net Facebook and YouTube pages.
A new platform for rare disease patients, powered by AWS
OCTOBER 28, 2020
Working with Amazon Web Services, EB Research Partnership is leading the development of an innovative data platform to drive progress in finding treatments and cures for EB. The vision is to combine patient datasets, publications, and resources, which are broken up among various studies and softwares, in one platform with machine-learning and rapid analytic capabilities, giving scientists an invaluable tool to speed the pace of research. While EB is the main focus of the platform for now, EBRP hopes to scale the project for all rare diseases.
Working with Amazon Web Services, EB Research Partnership is leading the development of an innovative data platform to drive progress in finding treatments and cures for EB. The vision is to combine patient datasets, publications, and resources, which are broken up among various studies and softwares, in one platform with machine-learning and rapid analytic capabilities, giving scientists an invaluable tool to speed the pace of research. While EB is the main focus of the platform for now, EBRP hopes to scale the project for all rare diseases.
EBRP and EBRF Come Together as Largest Global Organization Advancing Research for EB
OCTOBER 8, 2020
EB Research Partnership and EB Research Foundation (EBRF) of Australia united to become the largest global organization focused on funding research to discover treatments and cures for EB. As the two leading organizations funding EB research across the globe, EBRP and EBRF have formalized their funding partnership, which began in 2018, with EBRF coming under the EBRP banner as “EB Research Partnership Australia.” They will leverage EBRP’s competitive grant approval process, renowned Scientific Advisory Board, and innovative venture philanthropy business model to compound the impact of research funds. Together, the organizations will work around the clock to propel life-saving therapies into the hands of patients and families.
EB Research Partnership and EB Research Foundation (EBRF) of Australia united to become the largest global organization focused on funding research to discover treatments and cures for EB. As the two leading organizations funding EB research across the globe, EBRP and EBRF have formalized their funding partnership, which began in 2018, with EBRF coming under the EBRP banner as “EB Research Partnership Australia.” They will leverage EBRP’s competitive grant approval process, renowned Scientific Advisory Board, and innovative venture philanthropy business model to compound the impact of research funds. Together, the organizations will work around the clock to propel life-saving therapies into the hands of patients and families.
How Nonprofit Foundations Can Sustainably Fund Disease Research
SEPTEMBER 30, 2020
Harvard Business Review highlights EBRP's businesslike approach to fundraising as a method for other nonprofits focused on precision medicine to succeed in a field where significant capital is vital to keep up with rapidly advancing science. By creating sustainable revenue streams through Venture Philanthropy, EBRP maximizes the impact of donations, which, in turn, accelerates the path to therapies for EB.
Harvard Business Review highlights EBRP's businesslike approach to fundraising as a method for other nonprofits focused on precision medicine to succeed in a field where significant capital is vital to keep up with rapidly advancing science. By creating sustainable revenue streams through Venture Philanthropy, EBRP maximizes the impact of donations, which, in turn, accelerates the path to therapies for EB.
RBC Capital Markets and RBC Foundation USA’s 8-year Legacy of Support for EB Research Partnership Surpasses $230,000 for Rare Disease ResearcH
SEPTEMBER 1, 2020
EBRP announced a $35,000 gift from longtime supporter, RBC Foundation USA, extending our 8-year partnership, which has surpassed $230,000 in funding for life-saving EB research projects and therapies. Since RBC Capital Markets and RBC Foundation USA’s inaugural gifts in 2013, EBRP has funded 75 projects under their innovative Venture Philanthropy model, directly impacting the clinical landscape; the number of clinical trials in EB has increased by 15x, from 2 when they started to more than 30 today, including 4 Phase III clinical trials for the first time ever.
EBRP announced a $35,000 gift from longtime supporter, RBC Foundation USA, extending our 8-year partnership, which has surpassed $230,000 in funding for life-saving EB research projects and therapies. Since RBC Capital Markets and RBC Foundation USA’s inaugural gifts in 2013, EBRP has funded 75 projects under their innovative Venture Philanthropy model, directly impacting the clinical landscape; the number of clinical trials in EB has increased by 15x, from 2 when they started to more than 30 today, including 4 Phase III clinical trials for the first time ever.
Venture Philanthropy in Action: A Case Study of EB Research Partnership and ProQR
AUGUST 17, 2020
Patient-driven foundations are focused on the asset that can’t be replaced—time. " The Milken Institute's FasterCures took a deep dive into our Venture Philanthropy model in The Research Acceleration and Innovation Network (TRAIN) webinar series. The discussion focuses on the formation of Wings Therapeutics, facilitated by EBRP, to take over development of ProQR Therapeutics' EB therapy.
Patient-driven foundations are focused on the asset that can’t be replaced—time. " The Milken Institute's FasterCures took a deep dive into our Venture Philanthropy model in The Research Acceleration and Innovation Network (TRAIN) webinar series. The discussion focuses on the formation of Wings Therapeutics, facilitated by EBRP, to take over development of ProQR Therapeutics' EB therapy.
Medical nonprofits are struggling during COVID-19. Harvard group offers a survival roadmap
AUGUST 13, 2020
"Just because you're a nonprofit doesn't mean you can't act like a business" says EBRP CEO Michael Hund in USA Today. As a member of Harvard Business School's Kraft Precision Medicine Accelerator, a program that offers guidance to medical nonprofits in search of cures, he advises the group on navigating venture philanthropy. Although COVID-19 has posed unique challenges to the medical research community, EBRP has forged ahead to advance therapies for EB.
"Just because you're a nonprofit doesn't mean you can't act like a business" says EBRP CEO Michael Hund in USA Today. As a member of Harvard Business School's Kraft Precision Medicine Accelerator, a program that offers guidance to medical nonprofits in search of cures, he advises the group on navigating venture philanthropy. Although COVID-19 has posed unique challenges to the medical research community, EBRP has forged ahead to advance therapies for EB.
Letter from ceo in response to covid-19 pandemic
APRIL 7, 2020
EBRP CEO, Michael Hund, details our response to the COVID-19 pandemic and reaffirms our commitment to discovering treatments and cures for EB. Read the full statement by clicking the button below.
EBRP CEO, Michael Hund, details our response to the COVID-19 pandemic and reaffirms our commitment to discovering treatments and cures for EB. Read the full statement by clicking the button below.
Wellesley residents support fund-raiser for ‘Butterfly Children’
MARCH 27, 2020
“When we asked Emily very early on how we could help, she said, ‘you can help me by finding a cure for my daughter,'” says Kristan Fletcher Khtikian to the The Boston Globe. In response, 10 lifelong friends of EBRP Board Member and mother to Elodie, Emily Kubik, founded the Plunge for Elodie in 2018. Over the past 3 years, the #PlungeForElodie has raised over $600,000.
“When we asked Emily very early on how we could help, she said, ‘you can help me by finding a cure for my daughter,'” says Kristan Fletcher Khtikian to the The Boston Globe. In response, 10 lifelong friends of EBRP Board Member and mother to Elodie, Emily Kubik, founded the Plunge for Elodie in 2018. Over the past 3 years, the #PlungeForElodie has raised over $600,000.
EB Research Partnership Announces the 3rd Annual Plunge for Elodie Fundraiser March 7 & 8, 2020, with Five Same-Weekend Plunges Around the Globe
FEBRUARY 29, 2020
In honor of Rare Disease Day, EB Research Partnership announced the 3rd annual Plunge For Elodie will be held on March 7 & 8 and has become an international event with five plunge locations. Orginally a small hometown fundraiser, the goal this year is $300,000, all of which benefits EB Research Partnership. Click the button below to read the full press release.
In honor of Rare Disease Day, EB Research Partnership announced the 3rd annual Plunge For Elodie will be held on March 7 & 8 and has become an international event with five plunge locations. Orginally a small hometown fundraiser, the goal this year is $300,000, all of which benefits EB Research Partnership. Click the button below to read the full press release.
Closing the Gap: How an Innovative Funding Model is Delivering Hope
FEBRUARY 10, 2020
Thank you to Milken Institute's FasterCures for highlighting our Venture Philanthropy model. We retain financial interests in the projects we fund and share in their commercial success. Because of our innovative approach, we're capable of funding larger-scale projects than we would by employing a traditional non-profit model. This means more capital to #HealEB, faster.
Thank you to Milken Institute's FasterCures for highlighting our Venture Philanthropy model. We retain financial interests in the projects we fund and share in their commercial success. Because of our innovative approach, we're capable of funding larger-scale projects than we would by employing a traditional non-profit model. This means more capital to #HealEB, faster.
The Value of Patient Organizations As Data Partners
FEBRUARY 10, 2020
As a speaker for the Milken Institute's FasterCures webinar titled "Patient Organizations as Research and Data Partners," EBRP CEO Michael Hund discussed our initiative with Amazon Web Services to create a collaborative large-scale data platform to benefit the EB community and beyond.
As a speaker for the Milken Institute's FasterCures webinar titled "Patient Organizations as Research and Data Partners," EBRP CEO Michael Hund discussed our initiative with Amazon Web Services to create a collaborative large-scale data platform to benefit the EB community and beyond.
EB Research Partnership Announces New $3 Million Gift from the Ann & Ari Deshe Family
NOVEMBER 7, 2019
EB Research Partnership announced a $3 Million gift from the Ann and Ari Deshe Family, who will be honored for their leadership at the 10th Annual ACTion for Jackson benefit on the evening of November 7 at the Mandarin Oriental Hotel. This gift makes the event the largest EB fundraiser in history with more than $4 million expected to be raised.
EB Research Partnership announced a $3 Million gift from the Ann and Ari Deshe Family, who will be honored for their leadership at the 10th Annual ACTion for Jackson benefit on the evening of November 7 at the Mandarin Oriental Hotel. This gift makes the event the largest EB fundraiser in history with more than $4 million expected to be raised.
Memento mori to Sponsor EB Research Partnership’s ACTion for Jackson Benefit in New York
OCTOBER 29, 2019
Memento Mori, a premium winery in Napa Valley, announced that they will be the Title Sponsor of ACTion for Jackson, EBRP's 10th annual benefit on November 7, 2019 at the Mandarin Oriental in New York City.
Memento Mori, a premium winery in Napa Valley, announced that they will be the Title Sponsor of ACTion for Jackson, EBRP's 10th annual benefit on November 7, 2019 at the Mandarin Oriental in New York City.
Eddie Vedder, Adam Sandler, Judd Apatow team up to bring laughs, music to Rock4EB! event
OCTOBER 7, 2019
EB Research Partnership Co-Founder Eddie Vedder along with Adam Sandler and Judd Apatow headlined the Rock4EB! fundraiser benefiting EBRP and EB Medical Research Foundation. The star-studded event that took place in Malibu raised more than $900,000 for EB research.
EB Research Partnership Co-Founder Eddie Vedder along with Adam Sandler and Judd Apatow headlined the Rock4EB! fundraiser benefiting EBRP and EB Medical Research Foundation. The star-studded event that took place in Malibu raised more than $900,000 for EB research.
Eddie Vedder surprises boy with life-changing genetic disorder at WE Day California
AUGUST 9, 2019
WE Day, a celebration for youth that have made a positive impact on the world, featured EBRP Co-Founder Eddie Vedder surprising Eli and Lily Meyer, siblings who began the #ComeSayHi campaign. Eli is a 6-year-old with Junctional EB, and his older sister Lily was tired of the stares from strangers he received out in public. The siblings encourage people to "Come Say Hi" rather than stare at others who may be different.
WE Day, a celebration for youth that have made a positive impact on the world, featured EBRP Co-Founder Eddie Vedder surprising Eli and Lily Meyer, siblings who began the #ComeSayHi campaign. Eli is a 6-year-old with Junctional EB, and his older sister Lily was tired of the stares from strangers he received out in public. The siblings encourage people to "Come Say Hi" rather than stare at others who may be different.
ShineMaker Foundation Creates Innovation Award with EB Research Partnership
JULY 19, 2019
EB Research Partnership is honored to announce a grant from the ShineMaker Foundation, whose mission is to support and elevate people and organizations that explore innovative ideas to accomplish social good. Over the next three years, the ShineMaker Foundation will provide funding to establish the ShineMaker Innovation Award, challenging the research, scientific, and medical communities to advance treatments and cures for EB.
EB Research Partnership is honored to announce a grant from the ShineMaker Foundation, whose mission is to support and elevate people and organizations that explore innovative ideas to accomplish social good. Over the next three years, the ShineMaker Foundation will provide funding to establish the ShineMaker Innovation Award, challenging the research, scientific, and medical communities to advance treatments and cures for EB.
Neil Patrick Harris, Mahershala Ali, Chance The Rapper, Selena Gomez, Natalie Portman, Hailee Steinfeld, Meghan Trainor and WE's Craig Kielburger celebrate young people doing good at WE Day California
APRIL 25, 2019
WE Day, a celebration of young people doing good hosted by celebrities Neil Patrick Harris, Selena Gomez and more, highlighted Eli Meyer, EB advocate and co-creator of the "Come Say Hi To Eli" campaign. Eli was joined by Jill Vedder, EBRP Vice Chair, for a special surprise video from Eddie Vedder. Read the full article here.
WE Day, a celebration of young people doing good hosted by celebrities Neil Patrick Harris, Selena Gomez and more, highlighted Eli Meyer, EB advocate and co-creator of the "Come Say Hi To Eli" campaign. Eli was joined by Jill Vedder, EBRP Vice Chair, for a special surprise video from Eddie Vedder. Read the full article here.
EMA Grants PRIME Eligibility for KB103 to Treat DEB
MARCH 29, 2019
Krystal Biotech announced that the European Medicines Agency (EMA) has given KB103, Krystal's topical gene therapy candidate for treatment of DEB, PRIME (PRIority MEdicines) designation, which is awarded to promising treatments that target an unmet medical need. Through the PRIME program, the EMA offers support to expedite the path to drug evaluation. Read the full press release here.
Krystal Biotech announced that the European Medicines Agency (EMA) has given KB103, Krystal's topical gene therapy candidate for treatment of DEB, PRIME (PRIority MEdicines) designation, which is awarded to promising treatments that target an unmet medical need. Through the PRIME program, the EMA offers support to expedite the path to drug evaluation. Read the full press release here.
ProQR spins out all DEB activities into newly formed Wings Therapeutics created by EBRP
MARCH 26, 2019
ProQR Therapeutics announced the strategic spin out of all Dystrophic EB (DEB) activities into Wings Therapeutics, a new company formed and financed by EB Research Partnership. Wings Therapeutics will continue to conduct clinical trials of QR-313 in exon 73 and progress other RNA molecules designed for other DEB mutations. Read the full press release here.
ProQR Therapeutics announced the strategic spin out of all Dystrophic EB (DEB) activities into Wings Therapeutics, a new company formed and financed by EB Research Partnership. Wings Therapeutics will continue to conduct clinical trials of QR-313 in exon 73 and progress other RNA molecules designed for other DEB mutations. Read the full press release here.
ESPN’s Scott Van Pelt to Host 2nd Annual Change for Charley on March 9 in Chicago
MARCH 1, 2019
EB Research Partnership announced the 2nd annual Change for Charley gala will take place on Saturday, 3/9, from 7pm-1am at Artifact Events in Chicago, IL. Emceed by ESPN's Scott Van Pelt, the inspiring event features food and drinks, an exclusive auction, and live entertainment. Visit changeforcharley.org to purchase tickets and read the full press release here.
EB Research Partnership announced the 2nd annual Change for Charley gala will take place on Saturday, 3/9, from 7pm-1am at Artifact Events in Chicago, IL. Emceed by ESPN's Scott Van Pelt, the inspiring event features food and drinks, an exclusive auction, and live entertainment. Visit changeforcharley.org to purchase tickets and read the full press release here.
Luis Ortiz named ambassador for EB Research Partnership
MARCH 1, 2019
EB Research Partnership presented heavyweight boxer Luis "King Kong" Ortiz was with an EB Ambassador Award on Rare Disease Day during the press conference in advance of his upcoming match on Saturday. The award recognizes Ortiz's leadership in joining us to accelerate treatments and cures for EB, not only for his daughter, Lismercedes, who lives with the disease, but the thousands worldwide like her. Read the full article here.
EB Research Partnership presented heavyweight boxer Luis "King Kong" Ortiz was with an EB Ambassador Award on Rare Disease Day during the press conference in advance of his upcoming match on Saturday. The award recognizes Ortiz's leadership in joining us to accelerate treatments and cures for EB, not only for his daughter, Lismercedes, who lives with the disease, but the thousands worldwide like her. Read the full article here.
Phoenix Tissue Repair Doses First Patient in Phase 1/2 Clinical Trial of PTR-01 (BBP-589) for Treatment of Recessive Dystrophic EB (RDEB)
FEBRUARY 22, 2019
Phoenix Tissue Repair has dosed the first patient in their Phase 1/2 in-human clinical trial of PTR-01, a protein replacement therapy for recessive dystrophic EB. The trial will evaluate the safety, tolerability, and pharmacokinetics of PTR-01 in RDEB patients along with various secondary endpoints. Read the full press release here.
Phoenix Tissue Repair has dosed the first patient in their Phase 1/2 in-human clinical trial of PTR-01, a protein replacement therapy for recessive dystrophic EB. The trial will evaluate the safety, tolerability, and pharmacokinetics of PTR-01 in RDEB patients along with various secondary endpoints. Read the full press release here.
EB Research Partnership Announces the 2nd Annual Plunge for Elodie on March 2 in Wellesley
FEBRUARY 21, 2019
EB Research Partnership announced the 2nd annual Plunge for Elodie on Saturday, March 2nd at Morses Pond in Wellesley, MA at 8am. In its second year, Plunge for Elodie has expanded to include a satellite plunge at Edgewater Park Beach in Cleveland, OH at 2:30pm. Get involved at plungeforelodie.org and read the full press release here.
EB Research Partnership announced the 2nd annual Plunge for Elodie on Saturday, March 2nd at Morses Pond in Wellesley, MA at 8am. In its second year, Plunge for Elodie has expanded to include a satellite plunge at Edgewater Park Beach in Cleveland, OH at 2:30pm. Get involved at plungeforelodie.org and read the full press release here.
EBRP, EBRF and other Global EB Charities Collaborate to Announce $1 Million Award for EB Simplex
DECEMBER 21, 2018
We announced a $1M research award for a disease-modifying treatment or cure for EB Simplex (EBS) in collaboration with EB Research Foundation, EMBRF, and the John and Anne Oros Foundation. EBS is the most common subtype of EB, however there are currently few projects aimed at developing therapies for EBS patients. With our partners, we look forward to advancing research for this underserved community. Read the full press release here.
We announced a $1M research award for a disease-modifying treatment or cure for EB Simplex (EBS) in collaboration with EB Research Foundation, EMBRF, and the John and Anne Oros Foundation. EBS is the most common subtype of EB, however there are currently few projects aimed at developing therapies for EBS patients. With our partners, we look forward to advancing research for this underserved community. Read the full press release here.
Fibrocell Receives $900,000 Investment from EBRP and EBMRF
DECEMBER 11, 2018
EB Research Partnership and EB Medical Research Foundation have invested $900,000 into Fibrocell's FCX-007 gene therapy for treatment of Recessive Dystrophic EB. Through EBRP's innovative Venture Philantrhopy model, the organizations received stock in exchange for the investment. Read the full press release here.
EB Research Partnership and EB Medical Research Foundation have invested $900,000 into Fibrocell's FCX-007 gene therapy for treatment of Recessive Dystrophic EB. Through EBRP's innovative Venture Philantrhopy model, the organizations received stock in exchange for the investment. Read the full press release here.
Constant Pharmaceuticals to Initiate Clinical Development of TXA127 for Epidermolysis Bullosa
NOVEMBER 27, 2018
Constant Pharmaceuticals will begin development of an oral formulation of TXA127 for treatment of RDEB. In animal and in vitro models, TXA127 has demonstrated anti-fibrotic effects and caused reduction in the fusion of digits. After the development stage, Constant aims to open a Phase 2 trial of TXA127 in Europe and the United States. EBRP is a proud funder of this research. Read the full press release here.
Constant Pharmaceuticals will begin development of an oral formulation of TXA127 for treatment of RDEB. In animal and in vitro models, TXA127 has demonstrated anti-fibrotic effects and caused reduction in the fusion of digits. After the development stage, Constant aims to open a Phase 2 trial of TXA127 in Europe and the United States. EBRP is a proud funder of this research. Read the full press release here.
Nonprofit’s Innovative Investing Helps Cure a Childhood Disease
NOVEMBER 27, 2018
Creator by WeWork featured EBRP in a piece highlighting our innovative venture philanthropy model that is changing the way nonprofits think about fundraising and expediting the path to treatments and cures for EB. Read the article here.
Creator by WeWork featured EBRP in a piece highlighting our innovative venture philanthropy model that is changing the way nonprofits think about fundraising and expediting the path to treatments and cures for EB. Read the article here.
EB Research Partnership and EB Research Foundation Join Forces to Advance Breakthroughs in Epidermolysis Bullosa Research
AUGUST 27, 2018
EBRP and Australian-based EB Research Foundation, announced a global collaboration to accelerate our shared mission of advancing life-saving treatments for EB. EB Research Foundation will provide funding to EB Research Partnership to leverage our independent Scientific Advisory Board (SAB) as well as our innovative venture philanthropy model. Read the full press release here.
EBRP and Australian-based EB Research Foundation, announced a global collaboration to accelerate our shared mission of advancing life-saving treatments for EB. EB Research Foundation will provide funding to EB Research Partnership to leverage our independent Scientific Advisory Board (SAB) as well as our innovative venture philanthropy model. Read the full press release here.
Researchers Reveal Cause of Aggressive Skin Cancer in Patients with Butterfly Syndrome
AUGUST 22, 2018
EBRP is proud to support the work of an international team of researchers led by Thomas Jefferson University and UCSF Medical Center whose breakthrough development revealed the cause of aggressive skin cancer in patients with EB. This work opens the door to a more effective treatment approach for patients. Read more here.
EBRP is proud to support the work of an international team of researchers led by Thomas Jefferson University and UCSF Medical Center whose breakthrough development revealed the cause of aggressive skin cancer in patients with EB. This work opens the door to a more effective treatment approach for patients. Read more here.
ProQR Receives up to $5 Million in Partnership with EBRP and EBMRF to Develop QR-313 for DEB
MAY 21, 2018
EB Research Partnership and EBMRF partnered to fund up to $5 million for ProQR's Phase 1/2 human clinical trial of QR-313, a potential therapy for Dystrophic Epidermolysis Bullosa (DEB). QR-313 addresses mutations in exon 73 of the Collagen VII gene through exon skipping, causing the production of functional protein. Read the press release here.
EB Research Partnership and EBMRF partnered to fund up to $5 million for ProQR's Phase 1/2 human clinical trial of QR-313, a potential therapy for Dystrophic Epidermolysis Bullosa (DEB). QR-313 addresses mutations in exon 73 of the Collagen VII gene through exon skipping, causing the production of functional protein. Read the press release here.
Stanford Study oN Serlopitant for iNDICATES POSITIVE RESULTS
MAY 21, 2018
Researchers from Stanford University presented the results of their exploratory study of Serlopitant for treatment of pruritus in EB patients funded by EBRP and EBMRF. Results indicate that Serlopitant was well-tolerated and more effective in reducing itch compared to placebo, supporting the potential of this drug as a treatment for EB patients. Read the press release here.
Researchers from Stanford University presented the results of their exploratory study of Serlopitant for treatment of pruritus in EB patients funded by EBRP and EBMRF. Results indicate that Serlopitant was well-tolerated and more effective in reducing itch compared to placebo, supporting the potential of this drug as a treatment for EB patients. Read the press release here.
Parents Fight to Find Cure for Toddler Suffering From Rare Skin Disease: She's Covered in 'Wounds'
MARCH 15, 2018
People Health covered this story on Elodie Kubik, a two-year old with RDEB, and her family's exeperience with EB. Friends of the Kubiks started the Plunge for Elodie, a polar plunge, to raise awareness for EB and funds for EB Research Partnership. Actress Jessica Biel joined in on the action by plunging into her own swimming pool and posting a video on social media. Read more about the Kubiks and the Plunge for Elodie here.
People Health covered this story on Elodie Kubik, a two-year old with RDEB, and her family's exeperience with EB. Friends of the Kubiks started the Plunge for Elodie, a polar plunge, to raise awareness for EB and funds for EB Research Partnership. Actress Jessica Biel joined in on the action by plunging into her own swimming pool and posting a video on social media. Read more about the Kubiks and the Plunge for Elodie here.
Jessica Biel Just Introduced Us to the Next Ice Bucket Challenge
MARCH 4, 2018
Actress Jessica Biel took the Plunge For Elodie into her swimming pool and posted the video on social media to show her support for Elodie, a baby girl with RDEB. The Plunge for Elodie was started by lifelong friends of EBRP Board Member and Elodie's mother, Emily Kubik. Read Brit + Co's article and watch Biel's plunge here.
Actress Jessica Biel took the Plunge For Elodie into her swimming pool and posted the video on social media to show her support for Elodie, a baby girl with RDEB. The Plunge for Elodie was started by lifelong friends of EBRP Board Member and Elodie's mother, Emily Kubik. Read Brit + Co's article and watch Biel's plunge here.
In Hingham, friends plan to 'plunge for elodie'
FEBRUARY 23, 2018
The Boston Globe covered this heartwarming story of Board Member Emily Kubik and her lifelong friends who came together to find a cure for Kubik's daughter Elodie, a 19-month-old with RDEB. The friends planned to 'Plunge for Elodie' and have raised over $108,000 and counting. They will take a polar plunge into the chilly waters of Hingham Bathing Beach in Hingham, MA on Saturday, March 3rd.
The Boston Globe covered this heartwarming story of Board Member Emily Kubik and her lifelong friends who came together to find a cure for Kubik's daughter Elodie, a 19-month-old with RDEB. The friends planned to 'Plunge for Elodie' and have raised over $108,000 and counting. They will take a polar plunge into the chilly waters of Hingham Bathing Beach in Hingham, MA on Saturday, March 3rd.
High-Efficiency RNA-Based Reprogramming of Human Primary Fibroblasts
FEBRUARY 21, 2018
EB iPS Cell Consortium scientists led by Dr. Dennis Roop have discovered a highly efficient RNA-based method to reprogram patients' affected cells into iPS (induced pluripotent stem) cells. This technology is potentially curative and this breakthrough brings us closer to introducing iPSCs in clinical trials. This research has been accepted and validated by all EB iPS Cell Consortium members, who will use this method in their studies.
EB iPS Cell Consortium scientists led by Dr. Dennis Roop have discovered a highly efficient RNA-based method to reprogram patients' affected cells into iPS (induced pluripotent stem) cells. This technology is potentially curative and this breakthrough brings us closer to introducing iPSCs in clinical trials. This research has been accepted and validated by all EB iPS Cell Consortium members, who will use this method in their studies.
Inaugural Change for Charley
NOVEMBER 22, 2017
The Kauf Family of Chicago held their first annual Change for Charley event on November 11th which raised over $320,000 for EB Research Partnership! Brooke and Michael Kauf, featured in this Chicago Magazine article, held the event in honor of their 5-year-old daughter Charley, who lives with EB. Read the article to learn more and see some fantastic photos from this successful night for EB research.
The Kauf Family of Chicago held their first annual Change for Charley event on November 11th which raised over $320,000 for EB Research Partnership! Brooke and Michael Kauf, featured in this Chicago Magazine article, held the event in honor of their 5-year-old daughter Charley, who lives with EB. Read the article to learn more and see some fantastic photos from this successful night for EB research.
Krystal Biotech Receives Equity-Based Award from EBRP and EBMRF
NOVEMBER 3, 2017
EB Research Partnership and EB Medical Research Foundation granted an equity-based award totaling $770,000 to Krystal Biotech for research on treatments and cures for EB, specifically their lead-candidate KB103, a potential gene therapy for DEB. Read the press release here.
EB Research Partnership and EB Medical Research Foundation granted an equity-based award totaling $770,000 to Krystal Biotech for research on treatments and cures for EB, specifically their lead-candidate KB103, a potential gene therapy for DEB. Read the press release here.
ABEONA RECEIVES FDA BREAKTHROUGH therapy designation for eb-101
AUGUST 29, 2017
Abeona Therapeutics' EB-101 gene therapy program, which recently was recommended to enter phase 3 of clinical trial, has received Breakthrough Therapy designation by the FDA. EBRP is a proud partner to Abeona and the Stanford research team. Read more here.
Abeona Therapeutics' EB-101 gene therapy program, which recently was recommended to enter phase 3 of clinical trial, has received Breakthrough Therapy designation by the FDA. EBRP is a proud partner to Abeona and the Stanford research team. Read more here.
Students raise funds for teen with rare skin disease
JUNE 28, 2017
Students at Gaynor McCown Expeditionary Learning School in Staten Island, NY raised money for EBRP in honor of John Hudson Dilgen. Read more here.
Students at Gaynor McCown Expeditionary Learning School in Staten Island, NY raised money for EBRP in honor of John Hudson Dilgen. Read more here.
Butterfly babies
MAY 30, 2017
The Washington Post featured our friend Ella in a wonderful article detailing the hardships and the beauty in living with EB.
The Washington Post featured our friend Ella in a wonderful article detailing the hardships and the beauty in living with EB.
Watch Eddie Vedder Honor Tony Stewart at NASCAR Gala
DECEMBER 2, 2016
Eddie Vedder made a surprise appearance at the NASCAR Sprint Series Awards Banquet in Las Vegas to pay tribute to Tony Stewart in honor of his retirement. NASCAR donated $1.8 million to EBRP on behalf of Stewart. Watch the video and read more here!
Eddie Vedder made a surprise appearance at the NASCAR Sprint Series Awards Banquet in Las Vegas to pay tribute to Tony Stewart in honor of his retirement. NASCAR donated $1.8 million to EBRP on behalf of Stewart. Watch the video and read more here!
Pearl Jam’s Eddie Vedder surprises Tony Stewart at NASCAR Awards
DECEMBER 3, 2016
Eddie Vedder surprised Tony Stewart at the NASCAR awards, where both were thrilled to learn about the $1.8 million donation NASCAR made to EBRP in Stewart's name. Read more in this article.
Eddie Vedder surprised Tony Stewart at the NASCAR awards, where both were thrilled to learn about the $1.8 million donation NASCAR made to EBRP in Stewart's name. Read more in this article.
Clinical Trial Press Release: Stanford Medicine Gene Therapy
NOVEMBER 1, 2016
The Stanford researchers reported the results of four adult patients in the November 1st Journal of the American Medical Association. Read the press release for highlights on this groundbreaking research!
The Stanford researchers reported the results of four adult patients in the November 1st Journal of the American Medical Association. Read the press release for highlights on this groundbreaking research!
David Deshe and Alex Silver discuss venture philanthropy during 2016 Nexus Global Youth Summit
SEPTEMBER 9, 2016
Watch this video of a discussion on Venture Philanthropy featuring David Deshe, a major EBRP supporter, and Alex Silver, Chairman of EBRP's Board, facilitated by Heron Foundation’s Toni Johnson at the 2016 Nexus Global Youth Summit on July 21, 2016 at The New School in NYC.
Watch this video of a discussion on Venture Philanthropy featuring David Deshe, a major EBRP supporter, and Alex Silver, Chairman of EBRP's Board, facilitated by Heron Foundation’s Toni Johnson at the 2016 Nexus Global Youth Summit on July 21, 2016 at The New School in NYC.
Abeona, EBRP, and EBMRF to Collaborate on EB Treatments
AUGUST 9, 2016
Abeona Therapeutics, EB Research Partnership, and EB Medical Research Foundation announced their collaboration on gene therapy treatments for EB.
Read the press release for more information!
Abeona Therapeutics, EB Research Partnership, and EB Medical Research Foundation announced their collaboration on gene therapy treatments for EB.
Read the press release for more information!
Leading Genetic Researchers Partner to Find Treatments, Cures Faster for EB
AUGUST 1, 2016
EBRP brought together scientists from Stanford, Columbia and Colorado Universities to form the EB iPS Cell Consortium. The consortium will work together to reach their common goal of curing EB. Read the press release for more information!
EBRP brought together scientists from Stanford, Columbia and Colorado Universities to form the EB iPS Cell Consortium. The consortium will work together to reach their common goal of curing EB. Read the press release for more information!
Help for ‘butterfly children’ in sight, thanks to rockers who care
JANUARY 4, 2016
Read this article from the Today Show about Eddie and Jill Vedder's commitment to EBRP and finding a cure for kids like Mikey and Jackson.
Read this article from the Today Show about Eddie and Jill Vedder's commitment to EBRP and finding a cure for kids like Mikey and Jackson.
Miami’s Deshe family gives $3M to research for rare skin disorder
AUGUST 19, 2015
Read this article from the Miami Herald about the Deshe Family's tremendous $3 million gift to EB Research Partnership. We are extremely appreciative of the Deshes' continued support to our cause!
Read this article from the Miami Herald about the Deshe Family's tremendous $3 million gift to EB Research Partnership. We are extremely appreciative of the Deshes' continued support to our cause!
Father’s Day Message to Butterfly Child: I Would Give Anything to Take the Pain Away
JUNE 17, 2015
As the father of a child with Epidermolysis Bullosa, a rare genetic condition that makes the skin as delicate as a butterfly’s wings, Father’s Day is a reminder of Alex Silver’s journey to find a cure for his son, a butterfly child. In this letter, Silver reflects on the pain his son, Read the full story here.
As the father of a child with Epidermolysis Bullosa, a rare genetic condition that makes the skin as delicate as a butterfly’s wings, Father’s Day is a reminder of Alex Silver’s journey to find a cure for his son, a butterfly child. In this letter, Silver reflects on the pain his son, Read the full story here.
Facebook is a friend to those suffering rare maladies
MAY 25, 2015
EB Research Partnership’s Jamie Silver and Michelle Hall were interviewed for this article in the San Francisco Chronicle.
EB Research Partnership’s Jamie Silver and Michelle Hall were interviewed for this article in the San Francisco Chronicle.
EB Research Partnership Forms Scientific Advisory Board
MAY 18, 2015
EB Research Partnership formed its inaugural Scientific Advisory Board in May of 2015. The board, made up of esteemed medical professionals, will apply its collective scientific expertise to advise EBRP on which EB research projects we should fund. Read more here.
EB Research Partnership formed its inaugural Scientific Advisory Board in May of 2015. The board, made up of esteemed medical professionals, will apply its collective scientific expertise to advise EBRP on which EB research projects we should fund. Read more here.
Woman with Rare Skin Disease to Run Shamrock Shuffle
MARCH 26, 2015
Rachael Wrobel, a young woman with EB, ran the Shamrock Shuffle in Chicago to raise EB awareness and fundraise for EB Research Partnership. Visit our Endurance Events page to learn more about joining our team for events like this one!
Click here to read more about Rachael's story.
Rachael Wrobel, a young woman with EB, ran the Shamrock Shuffle in Chicago to raise EB awareness and fundraise for EB Research Partnership. Visit our Endurance Events page to learn more about joining our team for events like this one!
Click here to read more about Rachael's story.
OC Students Sell Lemonade to Raise Money, Awareness In Honor of Peer
JANUARY 19, 2015
Orange County elementary school students raised money and awareness for EB ion honor of Mikey Fullmer. Read more of this heartwarming story here.
Orange County elementary school students raised money and awareness for EB ion honor of Mikey Fullmer. Read more of this heartwarming story here.
Your Donations Can Buy Time. Your Generosity Can Give Life.
NOVEMBER 6, 2014
Read this speech given by Alexander Silver, Board Chairman and Co-Founder of EB Research Partnership, at our annual ACTion for Jackson event.
Read this speech given by Alexander Silver, Board Chairman and Co-Founder of EB Research Partnership, at our annual ACTion for Jackson event.
Hitting the right notes
OCTOBER 20, 2014
Eddie Vedder honors Dr. Jakub Tolar, a doctor and leading EB researcher at University of Minnesota, at the Pearl Jam concert on October 19, 2014 at Xcel Energy Center in St. Paul, MN. Read the full article and watch the video here.
Eddie Vedder honors Dr. Jakub Tolar, a doctor and leading EB researcher at University of Minnesota, at the Pearl Jam concert on October 19, 2014 at Xcel Energy Center in St. Paul, MN. Read the full article and watch the video here.
Eddie Vedder Supports Research for Curing Rare Skin Disease EB
Eddie Vedder encourages you to "Cause The Wave" to heal EB in this video campaign for EB Research Partnership. Click here to read the article and watch the video featured in Rolling Stone for more information.
A Venture to Cure an Orphan Disease
OCTOBER 2, 2014
Read this article featured in The Wall Street Journal about the formation of EB Research Partnership spotlighting two of our co-founders, Alexander and Jamie Silver.
Read this article featured in The Wall Street Journal about the formation of EB Research Partnership spotlighting two of our co-founders, Alexander and Jamie Silver.
Jackson Gabriel Silver Foundation and Heal EB Announce Merger
OCTOBER 1, 2014
The Jackson Gabriel Silver Foundation and Heal EB merged to form the collective EB Research Partnership on October 1, 2014. Read more about the formation of EBRP in our merger announcement.
The Jackson Gabriel Silver Foundation and Heal EB merged to form the collective EB Research Partnership on October 1, 2014. Read more about the formation of EBRP in our merger announcement.
The Doctors House Call: the boy with the butterfly skin
Watch this video featured on The Doctors TV about Dr. Jim Sears' visit with our friend John Hudson Dilgen, who has severe EB.
