Medical nonprofits are struggling during COVID-19. Harvard group offers a survival roadmapAUGUST 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. |
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. The show featured 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. Both songs are inspired by the EB community. |
Recent Press
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.
