8:45 AM - 12:00 PM

The Duchenne Community & Federal Research Agencies:Yesterday, Today, & Tomorrow

In 2000, upon PPMD’s request, the National Institutes of Health (NIH) held the first-ever federal workshop on Duchenne muscular dystrophy. Since that time, Duchenne care, research, and therapy development has made major progress impacting the lives of all those living with Duchenne and Becker. To mark twenty years since that initial gathering, PPMD has invited leaders from the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense (DOD) to present to a PPMD breakfast forum with Duchenne and Becker families.

The meeting will cover the investment to date from three key federal agencies, the progress from Duchenne and Becker programs, and include a cross-stakeholder discussion about where we go from here to accelerate progress in confronting Duchenne and Becker muscular dystrophy.

Read Agenda


  • Pat Furlong, President and CEO, Parent Project Muscular Dystrophy
  • Steven Groft, Ph.D., Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS)
  • Glen Nuckolls, Ph.D., Program Director, National Institute of Neurological Disorders and Stroke (NINDS)
  • Thomas Cheever, Ph.D., Program Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
  • James Kiley, Ph.D., Director, Division of Lung Diseases, National Heart, Lung, and Blood Institute (NHLBI)
  • Melissa Parisi, M.D., Ph.D., Chief, Intellectual and Developmental Disabilities Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
  • Natalie J. Street, M.S., C.G.C., Health Scientist, Rare Disorders and Health Outcomes Team Centers for Disease Control (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  • Marielena McGuire, Ph.D., Program Manager, Congressionally Directed Medical Research Programs, Department of Defense (CDMRP) 

Event Time: 8:45am - 12pm 

Event Location: The Dupont Circle Hotel, 1500 New Hampshire Ave NW, Washington, DC 20036
(Dupont Circle Metro Stop) 


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