EB Research Partnership

This is Michael. 🦋 And if he looks familiar, it's because we introduced him last year during !

He's 6 now, he loves baseball, dinosaurs, and big adventures, and he was born with Junctional EB, a rare form of Epidermolysis Bullosa (EB) that makes skin extremely fragile.

Behind every summer outing is a plan most people never see… protection, hydration, and the logistics of camp, travel, and getting through the day safely.

A year later, he's still shining, and still counting on research. As Julie puts it, a cure "would mean everything to so many families."

All summer, we're sharing real stories from the EB community and funding the work moving toward treatments and a cure.

100% of every gift funds research. 💛

Donate: https://give.ebresearch.org/campaign/816809/donate?utm_source=facebook&utm_medium=organic_social&utm_campaign=unstoppable_summer_2026&utm_content=feed_post

This is James.

He has run his whole life. He was also born with Kindler EB, a rare form of Epidermolysis Bullosa (EB) that makes skin fragile and especially sensitive to the sun.

Where James lives, summer never really ends. And the sun many runners chase is something he has to carefully plan around.

In his words, “The glare of the sun can be blinding, leading to headaches and, in my case, migraines.”

But unstoppable doesn’t mean easy. It means finding a way forward anyway.

Last weekend, James was running in the top 10 when a hamstring injury hit at kilometre 4. He couldn’t push the way he planned, but he kept going, finishing 30th out of 1,500 runners.

That’s what unstoppable looks like.

This summer, EB Research Partnership is sharing real stories from the EB community and raising support for research moving toward treatments and cures.

100% of every gift funds EB research. Donate below.



🦋 https://give.ebresearch.org/campaign/816809/donate?utm_source=facebook&utm_medium=organic_social&utm_campaign=unstoppable_summer_2026&utm_content=feed_post

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. 🩷

People with EB and caregivers know what outcomes matter most.

The COSEB: Core Outcome Sets for Epidermolysis Bullosa study team is seeking people with EB and caregivers around the world to help researchers identify the most important health outcomes in EB. These insights can help guide clinical research and support new ways to treat EB.

To qualify, you must be 16 or older, have or care for someone with Dystrophic EB, Junctional EB, or EB Simplex, and be willing to complete a 1–1.5 hour interview and short online survey in English.

🦋 Learn more about the study: https://redcap.fsm.northwestern.edu/surveys/?s=JKW7KJPL9D9HFK7Y

Study: COSEB: Core Outcome Sets for Epidermolysis Bullosa
PI: Dr. Amy Paller
IRB