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En souvenir de Dan Perez, cofondateur de la FSHD Society et moteur de la recherche et de la défense de la FSHD.

Meet Archer Sverdrup, a St. Louis native with a love for power soccer, arts and crafts, and hanging out with their loyal German Shepherd, Blue.
Archer recently joined a power chair soccer team, where they enjoy the thrill of the game and the camaraderie it brings. Living with symptoms of FSHD since birth, Archer has navigated a long road to diagnosis and selfacceptance. Now, they’re channeling their experiences into creating meaningful connections for others.
Recently, Archer co-founded Everything Early Onset, a support group specifically for people who are living with early-onset FSHD. “There’s a very particular grief that comes with losing things you never had,” Archer shares. Their group has quickly become a safe space for those with similar experiences, where members can exchange insights and feel seen.
Looking to the future, Archer plans to pursue a doctorate in occupational therapy, aiming to help others with disabilities in impactful ways. Through their community work and advocacy, they’re already creating change in the FSHD community.