EB Research Partnership

05/29/2026

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. Together, we’ve told stories of courage, connection, science, urgency, and hope, always with the EB community at the center.

Today we're celebrating 3 Telly Awards for our PSA featuring Eddie Vedder and Rowan Holler. But more than the awards, we're celebrating the people whose fingerprints are on every frame, who have shown up again and again with care, craft, and deep belief in this work.

We love you, Matt, Karen, and all that is. 🦋 Thank you for helping the world see EB more clearly and helping this community feel seen.

05/28/2026

“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 over 90% funded, 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://give.ebresearch.org/campaign/774055/donate?utm_source=organic+social&utm_medium=facebook&utm_campaign=MOTmatch

05/24/2026

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://zevaskyn.com/treatment-centers/
📍Patient support is available through Abeona Assist® at www.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 www.ZEVASKYN.com

05/23/2026

Every day, Dr. Jamie Feinstein sits with families navigating the reality of EB. The wound care, the pain, the hope, and the waiting. As the Pediatric Director of the EB Multidisciplinary Program at Children’s Hospital Colorado, he sees firsthand what's at stake, and how much every moment matters.

He's also seen what's possible. And right now, he says, we are closer than we've ever been. "Families can feel that. They see the increasing number of successes and emerging therapies but they still face the current realities of EB, like the hours of painful wound care and dressing changes."

That's why Jeff's $1 million match means so much from where he stands.

"A generous and consequential match like this helps accelerate the work that moves us from promising science to real treatments and, ultimately, to the cures that these children need right now."

For Dr. Feinstein, this match opens a door he's been working toward for years. "It brings us closer to a moment when I can sit with a family in clinic and offer not just management, but a definitive path forward."

🦋 $1 turns into $2. 100% of your donations go straight to EB Research. https://give.ebresearch.org/campaign/774055/donate?utm_source=organic+social&utm_medium=facebook&utm_campaign=MOTmatch

05/22/2026

We're heading to Brooklyn! 🏀🦋

Join EBRP and New York Liberty 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://liberty.spinzo.com/new-york-liberty-v-phoenix-mercury-2026-05-29-YQZSZ?group=eb-research-partnership-548f&_kx=Fx2O7VaR7U6OluCGJNclKw.TCaNwH

05/21/2026

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://give.ebresearch.org/campaign/774055/donate?utm_source=organic+social&utm_medium=facebook&utm_campaign=MOTmatch

05/21/2026

05/20/2026

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!



🦋 100% of your donation goes straight to EB research: ebresearch.org

05/19/2026

We are approaching one year since 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.

is here. A global virtual run/walk powered by everyone who refuses to stand still in the face of urgency. Pick your mileage. Rally your people. Turn momentum into a cure.

June 12 - June 28. Lace up with us!

🔗 Sign up → https://give.ebresearch.org/campaign/matter-of-miles/c790579?utm_source=organic+social&utm_medium=Facebook&utm_campaign=matterofmiles

05/18/2026

A massive thank you to the Seattle Mariners and San Diego Padres for playing in support of EB Research Partnership! 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!