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A Year of Connection, Community 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, 2024 marked another record breaking year for our organization and this community. We are proud to share that EBRP funded more than $5.6 million for 18 of the most innovative and impactful EB research projects. These projects spanned 6 different countries, covered all EB subtypes, and created a diverse portfolio of options to combat EB including gene editing and gene therapies, stem cell therapies, cancer therapies, immune therapies, mRNA, antibodies, technology platforms, and drug repurposing.
Since 2010, we have raised more than $70 million, funded more than 160 projects, and directly transformed the EB clinical trial landscape. From 2 clinical trials to over 40 (more than half of which we have directly funded), from 0 approved treatments to 2 FDA-approved life-changing therapies. 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. Our team is laser-focused – we want to cure EB by 2030.
In 2024, we were able to connect with the EB community across the globe. We brought together leading researchers, clinicians, patient and advocate ambassadors, biotech and pharma, government and healthcare experts for monthly Town Halls. We were able to share our mission and model with keynotes across the world including with the First Lady of the United States, the former President and First Lady of Germany, Yale University, MIT, Harvard, Global Genes, the Milken Institute, and the US and Australia Biotechnology Innovation Organizations. We Plunged for Elodie (and John Hudson, Brooks, and Jacob, Patterson and so many others too). We drove Change for Charley. We were Grateful for Graham. We made good on Wesson’s Wishes. Hallie Grace gave us Hope. We shared Special Books for Special Kids. We cut loose at the Cutting Room. We were again Reportin’ for Duty. We marched alongside you as you ran Marathons. And we joined many other amazing families that took action and rallied their communities.
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,
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Please consider making a tax deductible donation to support our work before the year ends.
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As 2024 wraps, we're taking 12 days to reflect on the beautiful moments and support we've received this year. We invested in bold research, supported EB families worldwide, and made incredible strides towards a cure for EB – and beyond.
From Nashville with Post Malone to Melbourne spreading our mission with top healthcare leaders, 2024 was not short on magical moments and tremendous milestones! Swipe through to see how YOUR support made this our best year yet. Together, we’re unstoppable. We are excited to keep the momentum going into 2025. Explore below to explore some of our highlights from 2024. |
Our mission is what we're laser-focused on, we're incredibly grateful to be part of this community driving towards a cure for EB by 2030. We know this work will create a butterfly effect for 10,000+ other rare disease.
Thank you to the brilliant medical experts who have dedicated their lives to finding a cure. Thank you to our Board and Co-Founders for your leadership. Thank you to our supporters for your generosity. Thank you to the brave families who face EB and motivate us every day. |
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The 2nd Annual Reportin' for Duty in Nashville brought the magic this year with the 2nd Reportin’ for Duty show! Featuring incredible performances by EBRP co-founder Eddie Vedder, friend Post Malone, and so many more. We raised over $1M for EB research and made some incredible memories.
Thank you to The War & Treaty, Jelly Roll, Ruby Amanfu, Jake Wesley Rogers, Dan Spencer for sharing your talents with us. Thank you to Uncle Nearest and the Weavers for hosting us in your gorgeous space. Thank you to the amazing team behind this event. And of course, thank you to everyone who joined us in making it a night to remember! |
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This year, we received top ratings from three independent charity platforms - Charity Navigator, Affinity, and Candid. Together, we’re building trust, transparency, and a brighter future for the EB community.
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This year, we hosted 4 powerful Town Halls, bringing together experts, families, and advocates to tackle key issues impacting those living with EB. Kirk Brazeau shared his son Archer’s story and living with new treatments, Humphrey Hanley discussed advocating for yourself and battling SCC in EB, Plunge for Elodie leaders showed how local actions can effect global change, Elizabeth Hoffman demonstrated the power of perseverance, and various experts in the field educated the community on breakthroughs in EB treatments and care. These conversations sparked hope and progress.
A special thank you to all of our speakers and presenters including Kirk Brazeau, Dr. Anthony Oro, Michael Hund, Humphrey Hanley, Professor Andrew South, Kristan Khtikian, Emily Kubik, Allison McGettigan, Annie McKenzie, Patterson McKenzie, Elizabeth Hoffman and Victoria Prieto Filice. |
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Small but mighty! Our team grew to 5 members this year, bringing even more heart and dedication to EB Research Partnership. Every win is a team effort, and we’re so grateful to work together for a cure.
These 5 core team members worked with researchers, families, community members, supporters, volunteers, musicians, artists and so many more this year to ensure maximum impact for our community. Thank you to everyone who makes working at EBRP such a gift! |
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This year, 6+ #EBActive events brought our community together across the country and raised funds for life-saving EB research. Thank you to Chiesi Global Rare Diseases and all of our NYC Marathon runners. Thank you to the GWS GIANTS for your MASSIVE advocacy this year. Thank you to everyone who attended events like the Butterfly Ball in Georgia, Wesson's Wish Golf Tournament in Texas, our EB Charity Match in Australia, the Cutting Room Benefit Show in New York, and Change for Charley's Virtual Casino Night. From marathons to meet-ups, your energy and enthusiasm are fueling the fight to end EB. |
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Making a splash for the 7th year! The Plunge for Elodie rallied over 12K supporters across 20+ locations, raising $500,000+ to fight EB and bring their total fundraising to over $2.5 million! "With the first FDA-approved EB treatments coming in 2023, the huge global growth of the Plunge for Elodie, and the incredible amount of momentum behind EB research – my family is filled with so much hope. I am so proud of Elodie for being brave enough to share her story and inspire so many. I'm also so grateful for every single person who has joined us in this fight. Your donations, shares, fundraising efforts and plunges are truly making an impact and we will not stop until there is a cure for EB," says Emily Kubik, Elodie's mom and EB Research Partnership Board Member. Thank you for taking the plunge with us - together, we’re unstoppable! |
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2024 was a record-breaking year for research funding! We awarded $5.6M to 18 projects this year, including groundbreaking techniques like stem cell and gene therapy. Thanks to this innovative work, the future of EB care is brighter than ever. Funding this life-saving research would not be possible without your generosity. Thank you to our supporters and the brilliant medical experts, researchers and technologists who have dedicated your lives to advancing science and hope! |
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From New York to Vienna, Melbourne to Germany, we spread EB awareness through 9+ global presentations this year. Our CEO, Michael Hund, and the team reached audiences far and wide, amplifying the voices of the EB community. |
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There are so many ways to make a difference! From hosting fundraisers to joining a town hall, here are 10 ways YOU can support EBRP and the EB community. Together, we can end EB!
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Meet the amazing individuals and families featured in Beneath the Skin: The EB Journey! This year, we featured 11 incredible families in our EBRP Australia documentary, showcasing the strength and resilience of the EB community. Thank you for sharing your stories and inspiring us all. Thank you to the Azny Family, the Azzopardi Family, Matt Bevilacqua, Lisa Brains, Dean Clifford, the Farr Family, the Hutchins Busch Family, the Page Family, the Pope Family, the Scott Family, the Willcocks Family, and so many more who made this moving documentary possible. During the making of the documentary Lisa Brains grew her butterfly wings and is sadly no longer with us. We honor her and all those affected by EB. |
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It is an absolute honor to have another 12 months to work towards our mission alongside you all. Thank you to every single person who donated, shared, made introductions, plunged in cold waters, hosted events, ran marathons, hosted fundraisers, and more. We are so incredibly full of gratitude as we look to 2025. |
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Our monthly giving program, #TheEffect, gives recurring donors access to exclusive content, merchandise and events.
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"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
"I’m incredibly grateful for the remarkable families, supporters, and fearless participants who helped grow EBRP’s community events program this year. Working on and attending your wonderful events was the highlight of my year, and I’m proud to say that thanks to you all, this program raised a record $1M+ in 2024!"
ALLISON MCGETTIGAN
Director of Community & Operations
"It’s hard to put into words how beautiful this year has been. We’ve seen families receive treatment for the first time and funded more research than ever. I am endlessly grateful for the sheer courage, beauty and vibrancy of the EB community. Working towards a cure in their honor is a great privilege to say the very least."
IMANI RIBADENEYRA
Chief Marketing Officer
"Joining EBRP in 2024 has been an incredible honor. Connecting with families in the EB community, collaborating with the EBRP staff, Board, and researchers, and attending both in-person and virtual events has been deeply rewarding and a true privilege. I am excited to see all that we will accomplish together in 2025!"
KATRINA PARKE
Executive Assistant
"Joining EBRP this year has been an incredible experience. It's beyond inspiring to work alongside such a passionate and dedicated group of people, especially the courageous EB warriors and their extraordinary families. I am honored to be part of this journey and am excited to see all the progress we can achieve together in the year ahead."
MARGOT SOSA
Development Coordinator
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Please consider making a tax deductible donation
to support our work before the year ends.
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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
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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 +$70M for life-saving research, contributing to a 20x growth in EB clinical trials, helping to accelerate the first two FDA approved EB treatments. |
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.
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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.
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Please consider making a tax deductible donation to support our work before the year ends.
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