Remembering Dan Perez: A Legacy of Advocacy and FSHD Research

The medical research community is mourning the loss of a pivotal figure in the fight against facioscapulohumeral muscular dystrophy (FSHD). Dan Perez, the co-founder and former President and CEO of the FSHD Society, passed away on October 2, 2025, at his home in Bedford, Massachusetts. He was 63.

A Visionary for the FSHD Community

Dan Perez’s impact on the field of muscular dystrophy is profound. Alongside co-founder Steve Jacobsen, Perez established the FSHD Society in 1991. At the time, FSHD was characterized by a lack of public awareness and minimal research investment. Recognizing that patients needed to drive the scientific agenda, Perez and Jacobsen spearheaded an advocacy movement that transformed the landscape for approximately 1 million people worldwide living with the condition.

Perez’s dedication to the organization was unwavering. For the first eight years of the Society’s existence, he served without compensation while maintaining a professional career in software development at a life-sciences firm involved in the Human Genome Project. For many years, the Society operated out of his dining room, serving as a hub for families seeking information, and connection.

Leadership and Evolution

Perez served as the President and CEO of the FSHD Society from its inception until 2017, when he was succeeded by Mark Stone. Following this transition, Perez continued to contribute his expertise as the Chief Science Officer on a part-time basis until his retirement at the end of 2019.

His work was deeply personal; his mother, Carol, was instrumental in the early years of the organization, and both she and his co-founder, Steve Jacobsen, lived with FSHD. Their collective efforts elevated FSHD from a neglected, rare disease to a focus of significant scientific inquiry and hope for therapeutic development.

Key Takeaways from a Legacy of Service

• Foundational Advocacy: Perez helped build the FSHD Society from a grassroots effort in 1991 into a major force for patient-led research.
• Commitment to the Cause: Perez provided years of uncompensated service, balancing his leadership role with a full-time career in the life-sciences sector.
• Lasting Impact: His work established the infrastructure and research foundation that continues to support the global community of people living with FSHD today.

Looking Ahead

While the passing of Dan Perez marks the end of an era for the FSHD Society, the foundation he built remains the cornerstone of current research and patient advocacy. As the scientific community continues to pursue breakthroughs for those affected by FSHD, the work initiated by Perez and his colleagues serves as the bedrock upon which future advancements are being constructed. His life’s work ensures that the mission of the Society, and the hope it provides to families, will continue to move forward.

Frequently Asked Questions

What is the FSHD Society?
The FSHD Society is an organization dedicated to finding treatments and a cure for facioscapulohumeral muscular dystrophy, while also providing support and advocacy for patients and their families.

What was Dan Perez’s role in the organization?
Perez was a co-founder of the Society in 1991 and served as its President and CEO until 2017. He later served as the Chief Science Officer until his retirement in 2019.

Why is his work significant?
Perez was instrumental in mobilizing the patient community to advocate for research at a time when very little was known about FSHD, ultimately shaping the current landscape of the field.