“A person’s true strength lies not in their muscles or fame, but in their courage to stand up for those who cannot defend themselves.” For Tom Holland, this belief has become a guiding principle far beyond his work as a blockbuster star. While audiences around the world know him as Spider-Man, Holland’s most meaningful fight is aimed at a devastating and often overlooked condition: Epidermolysis Bullosa, or EB.
Often referred to as the disease of “butterfly children,” Epidermolysis Bullosa causes the skin to blister and tear at the lightest touch. It is considered one of the most painful genetic conditions known to medicine, yet it remains chronically underfunded. Holland has not been quiet about this injustice. On multiple occasions, he has openly criticized the lack of research investment, warning that society is “failing these kids” by allowing rare diseases to remain invisible.
EB affects an estimated 500,000 people worldwide. Those born with the condition lack essential proteins that bind layers of skin together, leaving their bodies covered in open wounds and scars. Daily life involves hours of bandage changes, constant pain, and the risk of severe infections. Because EB is rare, research funding has historically lagged behind that of more common illnesses, leaving families with limited treatment options and little hope for a cure.
Holland decided that fame should be used as a megaphone, not a shield. In 2017, he and his family founded The Brothers Trust, a charity designed to spotlight causes that struggle to attract public attention. One of its central missions is supporting DEBRA, the leading organization funding EB research and providing care for affected families. Through global sweepstakes, premieres, and personal appearances, Holland has helped raise millions of dollars—money that directly fuels clinical trials and patient support.
What sets Holland apart is his refusal to keep advocacy separate from his career. During the press tour for Spider-Man: Far From Home, directed by Jon Watts, he consistently used interviews to talk about EB, forcing mainstream entertainment media to confront a painful reality usually ignored. He has also collaborated with fellow advocates like Bradley Cooper and Eddie Vedder at EB Research Partnership events that have raised over $10 million in a single night.
That pressure is beginning to yield results. In a historic milestone, the U.S. Food and Drug Administration recently approved the first topical gene therapy for EB, offering new hope to families who have waited decades for progress.
Tom Holland’s crusade proves that heroism does not require superpowers. By standing up for children living in unimaginable pain, he has redefined what strength truly means—turning celebrity into action, and compassion into change.