Daniel Perez

Daniel Paul Perez

Co-founder and director emeritus

Daniel Paul Perez is one of the nation’s leading advocates and experts on living with facioscapulohumeral muscular dystrophy (FSHD), FSHD molecular and genetics research, and clinical aspects of the disease. Daniel established the Society in 1987 after meeting fellow FSHD patient and Society co-founder, Stephen Jacobsen. Daniel developed the by-laws of the Society, incorporated the organization as a nonprofit corporation, and organized the Board of Directors and the Scientific Advisory Board.

He has testified nearly 50 times before congressional committees to seek funding for FSHD research and meets 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”), which was signed into law on December 18, 2001. The MD-CARE Act mandates the National Institutes of Health (NIH) and other federal agencies working on FSHD and other muscular dystrophies to rapidly accelerate research and efforts on these diseases. He serves as a Special Government Employee and member of the 15-member Federal Advisory Committee authorized by the MD-CARE Act, called the Muscular Dystrophy Coordinating Committee (MDCC).

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, and works 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.