A Personal Tribute to Dan Perez

While his family and our community morns the loss, I want to honor the life of Dan Perez, a man whose vision, determination, and heart changed the course of FSHD forever. When I first arrived at the FSHD Society 8+ years ago, Dan welcomed, educated, and armed me with the tools necessary to serve this community.

When Dan co-founded the FSHD Society, it was not out of ease or convenience, but out of necessity and love. He saw a future that did not yet exist — a future where families living with FSHD would not feel isolated, where science would not ignore this disease, and where hope would replace despair. And because he had the courage to act, that future began to take shape.

Dan laid the foundation for everything we are building today. The strength of this community, the breakthroughs in research, the path to treatments and a cure — none of it would have been possible without him. He gave us more than an organization. He gave us a movement, a voice, and a family.

And so, every accomplishment we have achieved, and every victory we will celebrate in the years ahead, bears Dan’s signature. His legacy is written into the very fabric of this fight. He will always be with us — in the progress we make, in the lives we touch, and in the hope we carry forward.

But Dan’s work is not finished. And he has entrusted it to us. Now it is our turn to carry the torch, to finish what he started, and to see his vision through until treatments and cures are not just discovered, but delivered to everyone living with FSHD.

That will be Dan’s enduring gift to the world. And it is our solemn promise to him: we will finish what he started.

Always remembering…

Mark

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Please use the buttons below to read Board of Directors Vice Chair Howard Chabner’s “In Memoriam: Daniel Paul Perez” or to honor Dan’s legacy with a memorial gift.

Read Howard’s In Memoriam Make a Memorial Donation