Muscular Dystrophy Coordinating Committee (MDCC) Meeting - March 2024

March 18, 2024 | 12:00 - 4:00 PM

Virtual Only | Webcast Live

NINDS is a member of the Muscular Dystrophy Coordinating Committee (MDCC), a Federal Advisory Committee including NIH institutes, other Federal agencies, and patient advocates. The MDCC identifies the many challenges confronting people with muscular dystrophy and their families and coordinates efforts to address them.

Agenda

Muscular Dystrophy Coordinating Committee Meeting - 3/18/2024
Time Presentation
12:00 PM – 12:15 PM

Introductions and Meeting Information
Glen Nuckolls, National Institute of Neurological Disorders and Stroke (NINDS/NIH), MDCC DFO

12:15  PM – 12:35 PM

Chair Presentation
Robert Carter, Deputy Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS/NIH)

12:35 PM – 12:50 PM

Group Discussion

12:50 PM – 1:05 PM

New member nominee presentation
Jennifer Levy – Coalition to Cure Calpain 3 (C3)

1:05 PM – 1:30 PM

Meeting/Conference Reports
Muscular Dystrophy Association Clinical and Scientific Conference – March 3-6, 2024
Angela Lek, MDA

EveryLife Foundation – Rare Disease Week, Feb 25-March 1, 2024
Annie Kennedy, EveryLife Foundation

1:30 PM – 1:50 PM Rare Diseases: Considerations for the Development of Drugs and Biological Products Guidance for Industry
Cynthia Welch, Office of New Drugs, Center for Drug Evaluation and Research (CDER), U.S. Food & Drug Administration
1:50  PM – 2:00 PM Break
2:00 PM – 3:50 PM

Exercise in Muscular Dystrophies: Current Understanding and Future Directions

“Gaps:  Maximizing Health Potential Through Exercise Impact on Neuromuscular Disorders and Clinical Trials”

  • Tanja Taivassalo, Department of Physiology and Functional Genomics, University of Florida (Bio attached)
  • Tina Duong, Division of Neuromuscular Medicine, Stanford University
  • Nicole Voet, Rehabilitation Center Klimmendaal Arnhem, Radboud University Medical Center Nijmegen, the Netherlands

“The Molecular Transducers of Physical Activity Consortium (MoTrPAC)”

  • Dan Cooper, Institute for Clinical and Translational Science, Pediatric Exercise and Genomics Research Center, University of California, Irvine
3:50 PM – 4:00 PM

Closing remarks
Walter Koroshetz, Director, National Institute of Neurological Disorders and Stroke (NINDS/NIH)

4:00 PM Adjourn

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