top of page



Daniel Paul Perez is one of the leading advocates and experts on living with facioscapulohumeral muscular dystrophy (FSHD), FSHD molecular and genetics research and clinical aspects of FSHD.


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 the organization as a nonprofit corporation and organized the Board of Directors and Scientific Advisory Board. Currently, he is Director emeritus and Co-Founder of the FSHD Society and former Chairman, President & CEO.


Through the Society and his hands-on, roll-up-your-sleeves approach, Daniel has helped facilitate nearly $20 million in seed grant funding for several hundred projects worldwide that have led to key breakthroughs and that continue to yield dividends and strong progress in understanding aspects of FSHD.

He has testified more than 50 times before Congressional Committees seeking funding for FSHD research and has 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 in the passage and implementation of the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 ("MD-CARE Act"), signed into law Dec. 18, 2001 [MD CARE Act 2008]. The MD CARE Act mandates the National Institutes of Health (NIH) and other federal agencies working on FSHD and muscular dystrophy to rapidly accelerate research and efforts on these diseases.


Daniel serves as a Special Government Employee and Member of the 18-member Federal Advisory Committee authorized by the "MD-CARE Act" called the Muscular Dystrophy Coordinating Committee. These 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. He has an extensive background in software and database design, working on corporate MIS and financial systems, marketing research software and data acquisition. He was chief architect and designer of Oracle's multi-dimensional database application.


Daniel's expertise in data warehousing and databases led to his contributions in bio-informatics and databases for the Human Genome Project in Massachusetts.


He also worked as a senior database specialist on software designed for monitoring clinical drug trials.

Daniel and his wife, Sue, live in Bedford, Massachusetts. 

bottom of page