Louie
"We find joy and connection in spending quality time with our family and friends. Whether it's a BBQ, a baseball game, a concert, or time on the water. Our schedule and our hearts are always full!"
Unstoppable Summer. Every Day Counts.
EB doesn’t take the summer off. Neither does the search for cures. This summer, EB families are sharing their summer stories and you can help fund the research working to change what’s possible for them.
Help us reach our 2026 goal:
What is Unstoppable Summer?
A season of real stories. One shared goal.
Epidermolysis Bullosa, or EB, is a rare disease that can make skin painfully fragile. For families living with EB, summer can bring joy, connection, and extra challenges, from heat and wound care to planning around everyday moments many people take for granted. All summer, we're sharing real stories from the EB community and raising support for research working toward treatments and cures.
Summer brings more care
Heat, travel, water, and outdoor plans can add new layers of care for people living with EB.
Families keep showing up
Every story is different. Each one shows the love, planning, and strength behind everyday moments.
Research moves hope forward
EBRP funds science designed to bring better treatments, and ultimately cures, closer to families.
The EB Community
Meet the families behind the stories
A few of the families who shared their summers with us last year, in their own words.
Ellie & Zoe
"We love live music, and anytime we can get to a concert, we do! Some of our core memories are together singing and dancing."
Michael
"Our family loves swimming, gardening, and going to the beach in the summer, spending time with family and friends. Michael loves playing with his cousins."
PICK YOUR PATH TO HOPE
Every kind of gift helps.
Chip in weekly, give once, or keep the momentum going all year. However you show up, you're helping fund EB research for families counting on what comes next.