|
|
|
2023: A Record Breaking Year of Milestones, Momentum, and Progress Towards a Cure
At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the unprecedented progress being made towards achieving that goal and our team is more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
With your generous support in 2023, EBRP achieved a record breaking year for dollars raised and research funded: we raised more than $8 million to fund 18 innovative research projects across 5 countries. This work will accelerate cutting-edge science with the potential to heal all forms of EB via a portfolio of breakthrough approaches such as gene therapies, immune therapies, antibodies, messenger RNA, stem cell therapies, curative medicine, and more. Since 2010, we have raised nearly $60 million, funded more than 140 projects, and directly transformed the EB clinical trial landscape. From 2 clinical trials to over 40, from 0 approved treatments to 2 FDA-approved life-changing therapies, our team is laser-focused – we want to cure EB by 2030.
First-Ever FDA Approvals: 2023 was a year of major milestones. Not one, but two FDA approvals. In May, the first FDA approved treatment for EB and the first ever approved topical gene therapy was achieved. EBRP invested in Krystal Biotech’s VYJUVEK for the treatment of Dystrophic Epidermolysis Bullosa back in 2017 using our innovative Venture Philanthropy model. EBRP was able to generate a more than double return on our investment and reinvest that capital back into more EB projects. Then in December, Chiesi, a team EBRP has partnered with for more than 5 years, announced the FDA approval of FILSUVEZ, a topical gel for Junctional and Dystrophic Epidermolysis Bullosa patients. These approvals are not only a landmark victory for individuals living with EB and their families, but also a huge milestone for the rare disease community at large. Currently, 95% of rare diseases lack an FDA approved treatment — and you all are a part of the team that helped EB cross over into the 5%. With your support, we are rapidly changing this statistic.
In 2023, EBRP presented year 4 of our Venture Into Cures event, which has raised over $11 million since 2020 to accelerate a cure for EB and share our mission and stories of the EB community with millions of people. This October, led by Co-Founders Jill and Eddie Vedder, we united leading experts and the EB community in Seattle to focus on how together we can deliver treatments and a cure by 2030. We were joined by leading researchers, clinicians, patient and advocate ambassadors, biotech and pharma, government and healthcare experts over three days to celebrate progress, showcase the work of advocates and the medical community, and accelerate our mission. The event combined a Summit and Dinner, and culminated in two nights of concerts by Eddie Vedder at the famed Benaroya Hall all to raise more than $5 million.
Industry Leadership & Innovation: In 2023 we also saw EBRP’s model highlighted for our leadership and innovation by Yale, Harvard, MIT, Forbes, the Milken Institute, CEOs You Should Know, SPIN, PEOPLE, USA Today, Billboard, and the Chan Zuckerberg Institute. We’re creating extraordinary progress for EB and in the process, showing the world how cures are found. Our progress is teaching and pioneering a path for the hundreds of millions battling rare diseases worldwide.
While this progress is extremely exciting, our work is not done.
These are major milestones building more momentum than ever before, but they are not endpoints. They are key markers along the journey, but not our final destination. Having worked in service to the patient community for 20 years, these are the wins that we relentlessly fight for every day. And tomorrow, we will get up and continue fighting until there is a treatment for every patient and we achieve our ultimate goal of a cure.
We are honored to have you on the team that WILL cure EB and pioneer a path for the hundreds of millions battling rare diseases worldwide. Thank you for joining us as we continue on our venture into cures, for EB and beyond.
With gratitude,
|
|
FDA approvals, trivia nights, 5K races and more, 2023 was not short on magical moments and tremendous milestones!
We are excited to keep the momentum going into 2024 on our journey to find a cure for EB and pioneer a path for thousands of other rare diseases.
TAP and SWIPE below to explore some of our highlights from 2023.
We are excited to keep the momentum going into 2024 on our journey to find a cure for EB and pioneer a path for thousands of other rare diseases.
TAP and SWIPE below to explore some of our highlights from 2023.
|
2023 was a remarkable year, with two of the first-ever FDA approved EB treatments and a $5M+ fundraiser in Seattle, we are excited to keep the momentum going in 2024!
Our monthly giving program, THE EFFECT, gives recurring donors access to exclusive content, merchandise and events.
Our monthly giving program, THE EFFECT, gives recurring donors access to exclusive content, merchandise and events.
|
|
"Seeing our community come together and grow so much this year has filled me with pride, joy, gratitude and most importantly hope. I am in awe of the EB patient warriors, doctors, scientists, professors, biotech geniuses, artists, comedians, and families navigating this disease everyday. They deserve nothing short of a cure. From polar plunges in restaurants to concerts and comedy in Seattle, I am so grateful to every single person who has stood by us and believed in us. I feel more confident than ever – we can cure EB. This movement can create impact for the millions out there battling a rare disease."
JILL VEDDER Co-Founder & Chairwoman |
|
|
"I am extremely humbled and grateful to be able to stand next to these heroic patients, parents, researchers, and doctors as we work together to find a cure for EB. Sharing this mission and message with people around the world has filled me with extreme pride and hope. My wife and I have been working on this cause for over a decade and it is amazing to reflect on the progress that has been made. We can find a cure – the promise is real."
EDDIE VEDDER Co-Founder |
|
|
"2023 was not only an incredibly impactful year for the organization, but also for me as a new team member. Getting to meet so many brave EB warriors and their brilliant and beautiful families was easily the highlight of my year. From plunging with Elodie and Brooks to running with Graham to wine tasting with Nisha, 2023 will be a tough year to beat!" ALLISON MCGETTIGAN Director of Community & Operations |
|
|
"This year was remarkable in more ways than I can count. We filled the Adelaide Crows stadium in South Australia with butterflies, celebrated our community in Nashville, and even hosted our first benefit concert with our co-founder at the iconic Benaroya Hall. There are MANY moments to celebrate, however, above all else, seeing the brave and beautiful EB community receive not one but TWO FDA-approved treatments is easily the highlight of my year and career. I'm beyond inspired by our supporters and EB families, and more than excited to see the progress we can make towards a cure in 2024."
IMANI RIBADENEYRA Chief Marketing Officer |
|
|
Epidermolysis Bullosa (EB) is a devastating and life-threatening genetic skin disorder that affects children from birth. Individuals with EB lack critical proteins that bind the skin's two layers together, causing the skin to tear apart, blister, and shear off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. The majority battling EB are children, as many don’t live long into adulthood. Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities like eating, sleeping, walking and playing can become monumental tasks. Today, there are no cures for individuals battling EB, however, EB Research Partnership (EBRP) is dedicated to changing that. |
|
|
|
Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).
Over the last decade, EBRP has made remarkable strides, including raising +$50M for life-saving research, contributing to a 20x growth in EB clinical trials, helping to fund the first-ever FDA approved topical gene therapy and treatment for EB families. |
EBRP ensures sustainable funding for future EB research through an innovative Venture Philanthropy Model. Instead of simply making grants, EBRP searches the globe to strengthen and accelerate the most promising research projects. These projects are vetted through EBRP’s world-class Scientific Advisory Board.In exchange for funding, EBRP takes a financial interest in the work of research institutions. When those projects succeed, the returns are reinvested back into other promising EB research initiatives that are also scalable across thousands of other rare diseases. Every dollar invested at EBRP is multiplied — potentially many times over.
EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.
EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.
|
At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the progress being made towards achieving that goal and more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
