Muscular Dystrophy Coordinating Committee Meeting

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

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

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

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

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

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

Closing Remarks
Diana Bianchi, MD, NICHD