It is with deep sadness that we share the passing of Daniel Perez, co-founder of the FSHD Society in the United States.
Daniel was a visionary and tireless advocate for people living with FSHD. Living with the condition himself, he co-founded the FSHD Society in 1991 together with Steve Jacobsen. His dedication gave a powerful boost to scientific research and brought together thousands of families worldwide in a community of hope and solidarity.
Daniel testified before the U.S. Congress nearly 40 times and worked relentlessly to ensure that FSHD could no longer be ignored. His determination and vision laid the foundation for the progress we see today in research and advocacy.
His legacy lives on in every breakthrough and every step toward a treatment. We are deeply grateful for his lifelong commitment.
Our thoughts are with his family, friends, and all who were touched by his extraordinary life.
FSHD Europe