EB Research Partnership @EBResearch

What if your own cells could become the treatment? 🧬 For people living with recessive dystrophic epidermolysis bullosa (RDEB), fragile skin makes healing a constant challenge. This project is developing a personalized stem cell therapy that starts with a patient's own skin cells. Scientists correct the genetic mutation, transform those cells into stem cells, and then generate healthy skin cells designed for transplantation. 🏅 EBRP awarded $392,977 to this project as part of our 2025 research cycle. Help move EB research forward → donate today at ebresearch.org.

July is Disability Pride Month. 🦋 For the EB community, disability can touch so many parts of daily life. Wound care, pain, heat, mobility, school, work, and access to care. The Disability Pride flag honors the many experiences within the disability community, including physical, invisible, sensory, emotional, and intellectual disabilities, as well as those lost to ableism and barriers that still remain. This month, we’re honoring the disability community, listening to the people living it every day, and standing with the EB community as we work toward more treatments, more options, and more freedom. 🩷

What if healing could be wearable? 🦋 For people living with EB, chronic wounds can cause severe scarring, painful mitten deformities, and loss of hand function. EBRP awarded $357,939 to this project as part of our 2025 research cycle in support of @Columbia University developing a glove-shaped skin graft designed to improve healing and reduce inflammation. This is the science we fund. Help move it forward → donate today at ebresearch.org.

Save the date. Venture Into Cures returns to New York City. 🦋 On November 11, 2026, EB Research Partnership's signature benefit takes flight at Pier Sixty. Where Stories Take Flight will be an unforgettable evening of powerful stories from the EB community, live music, performances, visual art, notable appearances, and a few surprises along the way. Sponsorship opportunities are open now. Visit ebresearch.org/VIC2026 for more info. 🩷 If you are part of the EB community, there is no expectation to sponsor or purchase a ticket. Your seats are complimentary, and our team would be honored to welcome you.

The Matter of Time $1 Million Match is COMPLETE, meaning $2 million raised for EB research. Thank you to Dr. Jeff Heddles, whose extraordinary generosity inspired thousands of supporters to stand behind one shared belief. A cure for Epidermolysis Bullosa. This is not the finish line. Families living with EB are still waiting. Research is still moving. Clinical trials are still advancing. And every breakthrough brings us closer to more treatments and a cure. Today, we celebrate what we accomplished together. Tomorrow, we keep going. 🦋 Donate at ebresearch.org

One year ago today, Matter of Time premiered at Tribeca. Since then, it’s traveled from sold-out theaters to Netflix, bringing thousands closer to the EB community and the urgent fight for a cure. Driven by music. Carried by community. Fueled by hope. 🦋 Watch now on Netflix.

Where art meets science. 🎨🦋 Join us to celebrate the launch of our community art book and a conversation on the human side of EB research. We'll hear from Emily Boros-Rausch, an artist living with EB; Lara Peck, an advocate who recently underwent ZEVASKYN; Dr. Amy Paller of Northwestern, one of the clinicians trained to deliver it; and Michael Hund, EBRP's CEO. June 22 at 5 PM ET 🔗 RSVP: ebresearch.org/townhallrsvp

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The road to a cure is built by people who refuse to stop. Graham’s Gang is proof. 💗 This year’s #GratefulforGraham 5K brought Graham’s Gang together once again to run, walk, give, and show what it means to fight for a future without EB. To Graham, his family, the Utica Roadrunners, and every runner, walker, sponsor, volunteer, donor, and supporter, thank you for turning love into action. 🦋 Ready to move for a cure? Join EB Active and turn your next walk, run, ride, or community event into funding for EB research. ebresearch.org/ebactive

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@Stanford OTL’s 2025 Annual Report features a story 20 years in the making: the path from early EB research at Stanford to FDA approval of ZEVASKYN®, a landmark gene therapy for RDEB. For families living with EB, this breakthrough is more than a scientific milestone. It is proof that patient courage, bold research, and sustained funding can move discoveries from the lab to real life. EBRP is proud to have supported more than $10 million in EB research at Stanford, helping bridge the long and difficult gap between early science and approved treatment. Every breakthrough starts with belief. This one shows what belief can build. 🦋 Read the story: stanford.io/3RVgTzD

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And just like that… our final Plunge of the season is complete! 🌊💙 Last weekend, the Rippole Family and the Pittsburgh Plunge for Patterson community ended the #PlungeForElodie season with an incredible splash, tripling their fundraising goal for EB Research Partnership. What a way to close out the season. Thank you, Pittsburgh, for showing up, diving in, and making waves for EB research. The season may be complete, but the mission continues. Help us fund the research that brings us closer to a cure at plungeforelodie.org.

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Meet the scientific minds helping guide us closer to a cure for EB. EBRP’s Scientific Advisory Board brings together leading doctors, researchers, and experts who help review, shape, and strengthen the research we fund. Their insight helps ensure donor dollars move toward the projects with the greatest potential to change life for people living with EB. Breakthrough science needs more than funding. It needs the right people asking the right questions and pushing the field forward with urgency. Thank you to our SAB for helping guide the path ahead. 🦋 Learn more about our SAB at ebresearch.org/leadership

Some partners help you make content. Others help you carry a mission. Since 2018, Door Knocker Media has helped EBRP share EB stories with heart, honesty, and purpose. Today, we’re celebrating 3 @TellyAwards for our PSA featuring Eddie Vedder and Rowan Holler. More than the awards, we’re celebrating the people behind every frame. We love you, Matt, Karen, and everyone at DKM. 🦋 Thank you for helping the world see EB more clearly and helping this community feel seen.

“The more people you meet, the more you want to help.” Robbie Twible sat down with Dr. Jeff Heddles, the donor behind our Matter of Time $1 Million Match, to talk about what inspired him to step forward for the EB community and why he believes so deeply in EBRP’s mission. We’re now 90% there, and the final 10% matters. The sooner we raise the remaining funds, the sooner we unlock Jeff’s full $1 million and help accelerate even more EB research projects, clinical trials, and progress toward treatments and cures. 100% of every donation goes directly to research. 🦋 Donate to help us cross the finish line: give.ebresearch.org/campaign/77405…

ZEVASKYN® (prademagene zamikeracel), an FDA-approved gene-modified cellular sheet therapy, is now available at Children’s Hospital of Philadelphia (CHOP). 📍ZEVASKYN was approved by the FDA in April 2025 📍To see a list of additional ZEVASKYN Qualified Treatment Centers that are now accepting patients, visit zevaskyn.com/treatment-cent… 📍Patient support is available through Abeona Assist® at abeonaassist.com Connect with people who have been treated with ZEVASKYN, an their caregivers, through the Strong Together Network™ at [email protected] or 1-888-782-4042 💡 Learn more at ZEVASKYN.com

We're heading to Brooklyn! 🏀🦋 Join EBRP and @nyliberty on May 29th at Barclays Center! Grab your tickets through our link and $10 goes directly to finding a cure for Epidermolysis Bullosa. Part of the EB community and want to attend? DM us! Get your tickets here: liberty.spinzo.com/new-york-liber…

Robbie Twible sat down with Dr. Jeff Heddles, the donor behind our Matter of Time $1 Million Match, to ask what inspired him to step forward for the EB community. His answer reminds us what this match is really about... belief, urgency, and the chance to move research faster. Our match is now 80% complete, but the final 20% matters. It could help support 6–7 new EB research projects, up to half of a Phase 1 clinical trial, and faster progress toward treatments and a cure for Epidermolysis Bullosa. 100% of every donation goes directly to research. 🦋 Donate: give.ebresearch.org/campaign/77405…

On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever. Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come. When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide. That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one. From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like! #ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC @KrystalBiotech @AbeonaBio 🦋 100% of your donation goes straight to EB research: ebresearch.org

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We are approaching one year since #MatterOfTime premiered at @Tribeca. 🦋 What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement. Now we move with them, and for those with Epidermolysis Bullosa. #MatterOfMiles is a global virtual run/walk for everyone who refuses to stand still in the face of urgency. June 12–28. Pick your mileage. Rally your people. Help turn movement into a cure. Lace up with us. 🔗 Sign up → give.ebresearch.org/campaign/matte…

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A massive thank you to the @Mariners and @Padres for playing in support of @EBResearch! Every Vedder Cup game helps raise awareness for Epidermolysis Bullosa (EB) and fund research for a cure. From the players to the fans and everyone showing up to the ball field – thank you!