Muscular Dystrophy Coordinating Committee Meeting

10am - 2pm EDT

Virtual

Time Presentation
10:00-10:10

Introductions and general information
Glen Nuckolls, PhD, National Institute of Neurological Disorders and Stroke (NINDS/NIH), MDCC Designated Federal Official

10:10-10:30

Chair Presentation
Diana Bianchi, MD, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD/NIH), MDCC Chair

10:30-11:00

New Director Presentation
Lindsey Criswell, MD, MPH, DSc, Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS/NIH)

11:00-11:15

New Member Introduction
Emily Freilich, MD, Food and Drug Administration (FDA)

11:15-1:10

Respiratory and Sleep Complications of Muscular Dystrophies

  • 11:15 Patient Perspectives
    Donavon Decker
    Dan Perez
  • 11:35 Respiratory and Sleep Complications of the Muscular Dystrophies
    James Kiley, PhD, National Heart Lung and Blood Institute (NHLBI), NIH
  • 11:55 “Using MD STARnet to Understand Respiratory and Sleep Complications and Care in People with Muscular Dystrophies”
    Natalie Street, PhD, Centers of Disease Control and Prevention
  • 12:10 “Managing Airway Clearance in Neuromuscular Weakness: Clinical and Research Implications”
    Jonathan Finder, MD, University of Tennessee Health Science Center
  • 12:25 “Mechanical Ventilation in Neuromuscular Disease: Understanding and Ramifications”
    Hemant Sawnani, MD, Division of Pulmonary Medicine, University of Cincinnati
  • 12:40 “Advancing Inspiratory Muscle Training and Non-Invasive Ventilation Adherence”
    Matthias Boentert, PD, MD, Department of Neurology, Münster University Hospital, Münster, Germany
  • 12:55 “Novel Therapies and Respiratory Pathology in Muscular Dystrophies”
    Mai ElMallah, MD, MS, Department of Pediatrics, Duke University
1:10-1:50

Discussion of Respiratory and Sleep Complications of Muscular Dystrophies
MDCC committee members and meeting participants

1:50-2:00

Closing Remarks
Diana Bianchi, MD, NICHD

 

Was this page helpful?
Form Approved OMB# 0925-0648 Exp. Date 05/31/2021