23-Year-Old's Advocacy Leads to 3 FDA-Approved Treatments

A young advocate from Staten Island has left behind a legacy that will ease suffering for generations of children born with a rare genetic skin disorder.

John Hudson Dilgen spent 23 years living with Epidermolysis Bullosa, a condition so painful that the slightest touch could tear his skin. Yet he became one of the most powerful voices for research into the disease, voluntarily participating in clinical trials that led to the first three FDA-approved treatments for EB.

"He always said he didn't want other kids born tomorrow to go through what he went through," said his mother, Faye Dilgen. Even when confined to a wheelchair and covered head to toe in protective bandages, John traveled back and forth to Stanford during the 2020 pandemic to participate in research trials.

The remarkable part? John knew many of the treatments he tested wouldn't help him personally. "He knew some the trials and things he was doing would not benefit him, but would benefit other people, those being born with EB today," said Michael Hund, CEO of EB Research Partnership.

John's advocacy extended far beyond the lab. At just 14 years old, he began sharing his story through YouTube videos with Special Books by Special Kids. The first video reached over 16 million people, raising both awareness and millions of dollars for research.

His positive spirit inspired everyone he met. Frank Siller, CEO of the Tunnel to Towers Foundation, which provided John's family with a fully accessible home in 2018, called him "maybe the most courageous person I ever met in my life."

Why This Inspires

John's story reminds us that heroism isn't about superhuman strength. It's about choosing to help others even when you're fighting your own battles.

Actor Chris Hemsworth, who plays Thor in Marvel films, featured John in a video highlighting who the real heroes are. When asked how he wanted his story to unfold, John's answer was simple: "I want it to be a day when if a child is born with EB, he won't have to live with it long enough to experience the things that I've experienced."

That day is closer because of him. Three FDA-approved treatments now exist where there were none before, giving hope to families who once had little.

The community that John touched continues to rally around EB research. Volunteers have participated in polar plunges, galas, and marathons, raising millions of dollars. He was named an honorary New York City firefighter in 2019 for his bravery and inspiration.

"He was an angel," Siller said. "And he's in heaven right now."

John's legacy lives on in every child who will now receive treatment he helped make possible.