United States of America
Daniel Paul Perez is a graduate of Harvard College. 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 and worked on the Human Genome Project in Massachusetts. He also worked as a database specialist on software designed for monitoring clinical drug trials. Mr. Perez started his career in neurobiology and muscle research at Harvard. He subsequently moved into large scale information systems and databases developing skills in traditional management information systems as well as large scale databases and software design.
Mr. Perez’s expertise in data warehousing and databases led to his contributions in bio-informatics and databases for the Human Genome Project in Massachusetts. Mr. Perez’s dedication to founding the Society began when he met fellow FSHD patient Dr. Stephen Jacobsen in 1987. Daniel developed the by-laws of the Society, incorporated the organization as a nonprofit corporation and organized the Board of Directors and Scientific Advisory Board. Mr. Perez has testified nearly forty times before Congressional Committees seeking 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 research. In 2001, Mr. Perez 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 on December 18, 2001.
The MD CARE Act mandates the National Institutes of Health (NIH) and other federal agencies working on facioscapulohumeral muscular dystrophy and muscular dystrophy to rapidly accelerate research on these diseases. Mr. Perez serves as a Special Government Employee and Member of the fifteen member Federal Advisory Committee authorized by the ‘MD-CARE Act’ called the Muscular Dystrophy Coordinating Committee (MDCC). Daniel and his wife, Sue, live in Bedford, Massachusetts.