EB Research Partnership

This Father’s Day, we’re honoring the dads and father figures in the EB community whose love, care, and strength make a difference every day.

Know an EB dad, grandpa, uncle, caregiver, or father figure we should celebrate?

Send us a message. 🤍

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

The road to a cure is built by people who refuse to stop. Graham’s Gang is proof. 💗

This year’s 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

Stanford University 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 at https://stanford.io/3RVgTzD

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 Plunge for Elodie 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.