In Memoriam: Daniel Paul Perez

Written by Howard Chabner, Board Vice Chair, and shared on behalf of the entire FSHD Society Board of Directors

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The Board of Directors of the FSHD Society is deeply saddened to announce that Dan Perez, co-founder and former President/CEO, died on October 2, 2025. He died as he wished – at home in Bedford, Massachusetts, peacefully, in bed, with his loving wife Sue at his side. He was 63.

Dan was a pioneer and visionary without whom the FSHD field and community would not be where they are today. Dan’s life’s work gave hope to the approximately 1 million people worldwide who have FSHD and their families – even those who don’t know his name but are benefiting and deriving hope from what he started. Everything being accomplished today stands on the foundation he built.

Dan and Steve Jacobsen co-founded the Society in 1991. Steve died in 2006. Dan was President and CEO from inception until he was succeeded by Mark Stone in 2017. Dan served without pay until 1999, keeping his software day job at a life-sciences company working on the Human Genome Project. His dining room was the Society’s rent-free office until 2007, when it hired Nancy Van Zandt, its first professional not named Perez, and moved to a real office.  After Mark took the reins, Dan became Chief Science Officer on a part-time basis, retiring at the end of 2019. Dan’s mother Carol was very involved in the founding and early decades of the Society; they worked together closely. Steve, Carol, and Dan all had FSHD.

Dan and Steve founded the Society because not much was known about FSHD, very little research was being done, and they believed the only way to change that was for people with FSHD to advocate for themselves. Steve, a PhD virologist and one of the few scientists doing FSHD research, had recently lost his funding. At the time, FSHD was considered a rare type of muscular dystrophy and a fairly benign disease. It was believed that the different types of muscular dystrophy are sufficiently related so that understanding the cause and developing a cure for one would lead directly to solving the others. Dan and Steve disagreed with the conventional wisdom about the prevalence of the disease, its human cost, and the science. They were right. And they felt it was terribly unjust that FSHD was so overlooked for so long.

Dan was the primary architect of the Society’s research program, whereby the Society funded small research grants to scientists investigating FSHD. Dan recruited scientists to the field, especially those early in their career. He recruited a world-class scientific advisory board – which served without pay – to evaluate grant applications and strategize about research priorities. These grants jump-started the research and had a multiplier effect, enabling researchers to prove their hypotheses (or if not proven, to gain valuable information nonetheless) and leverage Society support to receive greater funding from other sources, both governmental and private, and expand their research. Research funded by the FSHD Society has led to the discovery of the DUX-4 gene that causes FSHD and many other important discoveries, and has yielded hundreds of scientific papers published in leading journals.

Dan initiated and organized a biennial patient conference now known as Patient Connect and an annual science conference, now the International Research Congress. From the outset, Dan fervently believed that a patient-driven approach would empower people with FSHD and their families, and also would improve the science by fostering meaningful, long-term collaborations among patients, clinicians, and scientists. Through Connect, scientists’ contact with patients gives them a powerful and concrete human connection and an emotional impetus for their research and insight into the disease from the patient perspective. Meeting the scientists enables patients to learn about the science of FSHD, and it fosters realistic, concrete hope for progress and an appreciation of how essential it is to donate blood and tissue, and to participate in studies and clinical trials.

The science conferences foster collaboration and constructive criticism among intensely committed and highly competitive researchers, moving the field forward synergistically and helping to create a research community. Dan also helped individual researchers in other ways, such as finding a temporary lab home for a researcher in New Orleans whose lab was destroyed by Hurricane Katrina, and connecting researchers with each other when he saw potential benefit.

Dan graduated from Harvard College with a BS in biology. Although he wasn’t a researcher, he understood the biology, pathology, and genetics of FSHD at a sophisticated level, besides knowing the symptoms first-hand and how to live a meaningful and productive life with FSHD. He continually studied and kept up with the science. He earned the respect, admiration, and gratitude of scientists and clinicians in the United States and abroad, who valued his advice, encouragement, and support.

He was instrumental in expanding the scope, and lobbying for passage, of the Muscular Dystrophy Community Assistance Research and Education Act of 2001 (MD CARE Act), the first law mandating federal funding for muscular dystrophy research. As originally written, the bill would have required funding for Duchenne and one other type of muscular dystrophy – FSHD and the other types were excluded. He marshalled facts, found allies, worked with senators and house members, testified before Congress, recruited others to testify, and persuaded Congress to expand the bill so the final legislation mandated research on all nine major types of muscular dystrophy, including FSHD. When the law was up for reauthorization, he was instrumental in persuading Congress to reauthorize it. Dan’s efforts were pivotal in creating a Senator Wellstone Muscular Dystrophy Cooperative Research Center for FSHD. Established by the MD CARE Act, Wellstone Centers are NIH-funded centers for muscular dystrophy research.

Since its inception and for many years, he was one of only a handful of public members on the Muscular Dystrophy Coordinating Committee, the NIH advisory committee mandated by the MD CARE Act that oversees the use of federal funds for muscular dystrophy research and helps write, and monitor progress on, the NIH muscular dystrophy research plan. Dan was the only patient advocate for FSHD and was heavily involved in writing the plan.

Over the years he testified many times before Congress in person and in writing about the status of FSHD research and the need to increase federal funding, helping to achieve increased funding and greater awareness of FSHD.

From the get-go, Carol, Steve, and Dan were committed to providing emotional support, factual information, educational programs, and practical advice to people with FSHD and their families. Carol had been a social worker, retiring at a senior level in the Massachusetts Rehabilitation Commission, so she understood how important these things are from her professional experience, not only as an individual with FSHD and a mother of one. They spent countless hours speaking to these individuals, especially newly diagnosed people, letting them know that they and their families were not alone, and encouraging them to get involved. These informal efforts led to a peer-to-peer volunteer counseling program, support groups, online bulletin boards and chat rooms, brochures, newsletters, this website, a YouTube channel, and more, including today’s FSHD Navigator and BetterLife FSHD. From Dan, Carol, and Steve’s efforts, a worldwide community developed.

The Society was the first organization in the world dedicated solely to FSHD. Dan and the Society have inspired and encouraged the formation of many others, including in Australia, Canada, pan-Europe, Italy, the Netherlands, and the UK.

Dan was diagnosed with FSHD as a pre-teen, used a scooter and later a power wheelchair full-time for many years, and wore hearing aids because of significant hearing loss caused by FSHD. His hearing loss impaired his speech. The fact that he was able to communicate well enough to be the emcee and host at conferences and meetings, and participate in countless phone calls, is testimony to his resolve, dedication, and resourcefulness. Dan’s decision and ability to continue working as long as he did with his level of disability were extraordinary and an inspiration to all who knew him.

We salute Dan! The best way to honor his legacy is to be inspired by him, persevere, be optimistic, support each other, and carry on what he started until treatments and a cure are available to everyone with FSHD.

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Please use the buttons below to read CEO Mark Stone’s “Personal Tribute to Dan Perez” or to honor Dan’s legacy with a memorial gift.

Read Mark’s Personal Tribute Make a Memorial Donation