A Letter from debra of America's Chair, Ryan Fullmer
Ryan Fullmer, founder of EBRP and Heal EB, shares his personal decision to shift his support to debra of America. In the letter below, he explains why debra’s impact today is critical for individuals and families living with Epidermolysis Bullosa (EB).
A Strategic Shift — Why I’m Supporting Debra of America
For over a decade, I poured my heart into EBRP and Heal EB, both organizations I founded. We built something extraordinary, a world-class engine for research, accelerating potential cures and treatments for Epidermolysis Bullosa. I’m proud of what we accomplished, and I always will be.
My family made the decision to step away from EBRP and commit our energy and support to debra of America.
Not everyone understands this move. That’s okay. It wasn’t made to win favor; it was made to align with where the greatest need is right now.
EBRP is a long-term bet. It’s about future breakthroughs, tomorrow’s therapies, and bold, visionary science. I believe in that mission, but I’m also realistic about the timeline to get there.
debra of America is showing up today. They’re providing direct support to EB patients and families — wound care supplies, patient conferences, EB Nurse Educator, health policy advocacy, and all the things people need while they wait for that future to arrive. debra of America funded and funds research but importantly, debra actively partners closely with the drug developers working to bring EB treatments to market, fostering an ecosystem where drug development is both timely and cost-effective. As the only EB organization collaborating directly with FDA regulators, debra helps ensure a smooth and efficient approval process for new therapies.
Biotech companies turn to debra for guidance in navigating the FDA, preparing approval applications, and securing funding from institutional investors. By bringing together patients, industry leaders, and regulators, debra has played a pivotal role in securing two FDA approvals — with a third expected this month. Beyond drug development, debra also advocates at the legislative level, working with Medicaid, Medicare, and policymakers to establish laws and policies that ensure equitable access to these life-changing therapies nationwide.
And let’s be honest, the families who are struggling with EB can’t afford to wait. Hope matters, but help matters too.
Strategically, this isn’t an abandonment of one model for another. It’s a rebalancing of priorities. We need research, yes, but we also need infrastructure, care coordination, and dignity for the people living with this disease every single day. debra is uniquely positioned to lead that charge.
Leaders have to make calls that aren’t always popular in the moment. They have to act based on what’s needed, not what’s comfortable. This shift may not make sense to everyone now, but I believe in time, it will.
Because real progress in the rare disease world isn’t just about treatments. It’s about systems that serve today and tomorrow.
Ryan Fullmer
Chair, debra of America
At debra of America, we are committed to improving the lives of those impacted by EB through direct support, education, advocacy, research funding, and close partnership with treatment developers. Join us in making an immediate impact.
