HARVARD BUSINESS SCHOOL: HOW EBRP IS VENTURING INTO CURESAUGUST 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. |
EB RESEARCH PARTNERSHIP RECEIVES 2022 HORIZON PRIZE, POWERED BY MIT SOLVESEPTEMBER 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. |
Eddie AND JILL Vedder DRAFT MUSIC, SPORTS, FILM STARS FOR VENTURE INTO CURES LIVESTREAMNOVEMBER 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. |
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. |
Recent Press
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.
