Daniel P. Perez

DANIEL P. PEREZ

May 7, 1962 - October 2, 2025

Daniel Paul Perez was one of the leading advocates and experts on living with facioscapulohumeral muscular dystrophy and co-founder of the FSH Society.

He passed away peacefully at his home in Bedford, MA on Thursday October 2, 2025, due to respiratory failure caused by FSHD. He was 63 years old. He is deeply loved and will be thought of often by his wife Susan and her family, his sister Rosanne Sterne and her husband Edward, their daughters Annelise, Gabriella and Camilla and her grandchildren Kingston, Vivian and Isla.

Daniel established the FSHD Society in 1991 after meeting fellow FSHD patient and Society co-founder, Dr. Stephen Jacobsen. Daniel developed the bylaws of the Society, incorporated as a nonprofit corporation and organized the Board of Directors and Scientific Advisory Board.

Through the Society Daniel helped facilitate nearly $20 million in seed grant funding for several hundred projects worldwide that have led to key breakthroughs that yielded dividends and strong progress in understanding aspects of FSHD.

He testified more than 50 times before Congressional Committees seeking funding for FSHD research and met regularly with researchers, clinicians and the heads of the National Institutes of Health and other federal agencies to help organize meetings, symposia, research plans, white papers, and research on dystrophy. In 2001, Daniel was a key architect and force behind the passage and implementation of the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 ("MD-CARE Act") which mandates that the National Institutes of Health (NIH) and other federal agencies begin working on FSHD and muscular dystrophy to rapidly accelerate research and efforts on these diseases.

Daniel served as a member of the Muscular Dystrophy Coordinating Committee whose efforts have increased research funding for all muscular dystrophies by more than $1 billion of which FSHD has received several hundred million dollars of increased funding.

A graduate of Harvard College, Daniel started his career in neurobiology and muscle research as an undergraduate. His expertise in data warehousing and databases led to his contributions in bio-informatics and databases for the Human Genome Project in Massachusetts.

A memorial service will be held for Daniel on Sunday, November 9th from 10am - 12pm at:

Douglass Funeral Home

51 Worthen Road

Lexington, MA 02421

In lieu of flowers please consider making a donation to the FSHD Society to further Dan's work. Donate Today

For those unable to attend in person, the memorial service will be live streamed and the link to connect to the service will be available here 30 minutes prior to the start of the service: (Link to be posted HERE).

The service will also be recorded and the link made available at the same website.