EB Research Partnership

EB Research Partnership funds research aimed at treating and curing Epidermolysis Bullosa (EB).
🦋 #HealEB
🔬 Find a cure

[EB Research Partnership @EBResearch]

A global story of urgency, love, and science, now ready for the world.

Matter of Time is available to Netflix members everywhere on February 9.

[EB Research Partnership @EBResearch]

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 https://t.co/UZoU3lKabQ

[EB Research Partnership @EBResearch]

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.

[EB Research Partnership @EBResearch]

“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: https://t.co/IefzHYiOzc

[EB Research Partnership @EBResearch]

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 https://t.co/tVtoqt5fAD
📍Patient support is available through Abeona Assist® at https://t.co/cP8UECXxmD

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 https://t.co/y5aeSqUku4

[EB Research Partnership @EBResearch]

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: https://t.co/oI8j5nejQ5

[EB Research Partnership @EBResearch]

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: https://t.co/IefzHYjmoK

[EB Research Partnership @EBResearch]

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: https://t.co/MtNfibuQzM

[EB Research Partnership @EBResearch]

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 → https://t.co/gGSS0KBmta

[Eddie Vedder @eddievedder]

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!

[Aaron Bregel @ABomb88]

Congrats to the Padres who won the 2026 @VedderCup. The real winner was @EBResearch

[EB Research Partnership @EBResearch]

He has EB. He loves baseball. And he has something to say. 🦋⚾

Robbie is an aspiring sportscaster living with Epidermolysis Bullosa and he's pumped for the Vedder Cup.

The @Mariners vs @Padres rivalry founded by Eddie Vedder raises funds for EB research. The series is live at T-Mobile Park through May 17. Every dollar funds a cure for those like Robbie.

See how you can be part of it → https://t.co/EoqHdf2ePL

Raffle closes May 17 at 11:59PM. 🦋

#VedderCup #EBResearch #EpidermolysisBullosa #Mariners #Padres #EddieVedder #RareDisease

[EB Research Partnership @EBResearch]

@TWiBiotech @Padres @Mariners Haha! Heard loud and clear! ⚾️🦋

[EB Research Partnership @EBResearch]

Did you know the #VedderCup is helping raise awareness for Epidermolysis Bullosa (EB), the “butterfly disease”? 🦋⚾️

The second half of the @Padres vs. @Mariners series heads to Seattle this Friday, May 15 at T-Mobile Park.

What started as a baseball rivalry is now helping spotlight the mission of @EBResearch, the nonprofit founded by Jill and Eddie Vedder to accelerate treatments and a cure for EB.

Visit below to join the City vs. City Challenge and enter to win 1 of 10 custom Vedder Cup jerseys, personalized with your name.

https://t.co/EoqHdf2ePL

100% of every dollar donated funds EB research.

[EB Research Partnership @EBResearch]

Last week, EBRP CEO, Michael Hund was invited to speak at the @MilkenInstitute Global Conference, one of the most influential cross-sector convenings in the world, where capital, policy, science, and culture meet. Innovative global leaders across finance, health, philanthropy, government, and entertainment gather to drive global impact and action. EBRP was proud to join other innovators like Dr. Jill Biden, @pitbull, Eva Longoria @EvaLongoria, Tiffany Haddish @TiffanyHaddish, Tom Brady @TomBrady, Lionel Ritchie , @SHAQ, FDA Commissioner @MartyMakary, and other world-changing global leaders.

Michael was invited to join "Rewriting the Rules: Scaling Innovation for Rare Diseases," a panel that brought together some of the most influential voices in rare disease today, or as Michael said, "The Rare Disease Avengers". Moderated by Becky Quick of CNBC, who shared her own journey as the mother of a child with SYNGAP disorder, the panel featured @DavidFajgenbaum (Every Cure), Nicola Blackwood (@GenomicsEngland ), Neil Kumar (@BridgeBioPharma ), and Will Lewis (@Insmed).

This is the kind of platform where EB Research Partnership's model belongs. Urgent patient need, breakthrough science, and catalytic capital converging to change what is possible. This week's conversation was a powerful reminder of both the scale of the challenge and the urgency of the moment. About 400 million people worldwide live with a rare disease. Only 5% have access to any approved treatment. And yet, we are at a genuine inflection point, driven by AI, genomics, platform-based therapies, and a new generation of funding models that are beginning to close the gap.

Michael shared our Venture into Cure's model, combining data platform innovation and investments in AI, collaborative research/ medical/ industry networks, and venture philanthropy deal structures that return capital to fuel the next breakthrough. An unprecedented model that has now helped accelerate three FDA approvals in two years. That model was built for exactly the kind of cross-sector stage that Milken represents. For the millions living with rare diseases that have never had a treatment, this is not incremental progress. It is a fundamental rewriting of the rules. And it is scalable.

For EBRP, being in that room is not just an honor. It is an affirmation that our approach belongs in the conversation about how the world solves rare disease. Patient-led. Capital-efficient. Scientifically rigorous. We are grateful to the Milken Institute and @fastercures, a Center of the Milken Institute for the platform, and to every patient, family, researcher, and partner whose trust makes this work possible.

🦋 The rules are being rewritten. We intend to help continue to write them.

🎥 Watch the full panel: https://t.co/32XZ2MtDOV

[EB Research Partnership @EBResearch]

@Padres lead 3–0. @Mariners gets home field next week. The Vedder Cup isn't over. 🦋

San Diego vs Seattle, competing off the field to fund a cure for EB, the cause closest to Jill and Eddie Vedder's hearts. 100% of every dollar goes to @EBResearch.

Anyone can enter to win a custom jersey personalized with your name. Only 10 exist.
https://t.co/XHgz1Gae0X

#VedderCup #PearlJam #EddieVedder #Padres #Mariners

[EB Research Partnership @EBResearch]

The world is plunging and Costa Rica went all in from the waterfalls of Bajos del Toro! 🇨🇷

One of our global Plunge for Elodie communities showed up in a big way for kids with EB. It’s a reminder that this movement has reached every corner of the world, united by one mission.

This plunge is powered by the @EliksaTx Therapeutics team, where EB Research Partnership has invested over $1.1M to help develop ELK-003, a first-of-its-kind eye drop designed to protect EB patients from corneal abrasions that can lead to blindness. With a clinical trial already underway and efficacy shown in preclinical models, the science is moving forward and every plunge, in every corner of the world, helps to make it all possible.

Thank you Eliksa for jumping in and showing up for families living with EB every single day. 💙

[EB Research Partnership @EBResearch]

Thank you to The Swellesley Report for featuring Plunge for Elodie and spotlighting the Wellesley community, Elodie’s story, and the powerful impact of coming together to support EB research 💙

https://t.co/TpYH8osn1r

[EB Research Partnership @EBResearch]

More than halfway to our $1M Match for Epidermolysis Bullosa (EB).

But halfway isn’t the goal, a cure is.

Every donation supports EB research and is matched dollar for dollar right now, thanks to the generosity of Dr. Jeff Heddles.

🦋 Double your impact today: https://t.co/IefzHYiOzc