MDCC June 23, 2008 Agenda

Seventh Annual Meeting of the Muscular Dystrophy Coordinating Committee
Washington Plaza Hotel 10 Thomas Circle, NW,
Washington, DC
June 23, 2008

2008 Meeting Themes: Therapy Development and Living with Muscular Dystrophy 

7:30-8:00         Continental Breakfast

8:00-8:15         Welcome, Introductions, and Conflict of Interest Statement
                      Story Landis, National Institute of Neurological Disorders and Stroke (NINDS)
                      and John Porter, NINDS

8:15-8:40        Perspectives on Living with Muscular Dystrophy
                     Brian Denger, Duchenne parent
                     Todd Stone, myotonic dystrophy parent

8:40-9:10        New Scientific Opportunity—Therapy Development for Myotonic Dystrophy
                     Charles Thornton, University of Rochester

MDCC Member Action Plan Reports

9:10-9:30        NIH Overview and NINDS Report
                     John Porter, NINDS

9:30-9:50        Wellstone Centers Program and National Institute of Arthritis and Musculoskeletal
                     and Skin Diseases (NIAMS) Report
                     Glen Nuckolls, NIAMS

9:50-10:10      Break

10:10-10:30    Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Report
                     James Hanson, NICHD

10:30-10:50    National Heart Lung and Blood Institute (NHLBI) Report
                     Susan Shurin, NHLBI

10:50-11:10    Department of Defense (DoD) Report
                     Melissa Kaime, DoD

11:10-11:30    Centers for Disease Control and Prevention (CDC) Report
                     Mark Swanson, CDC

11:30-11:50    FSH Society Report
                     Daniel Perez, FSH Society

11:50-12:20     Lunch

12:20-12:40     Parent Project Muscular Dystrophy (PPMD) Report
                      Pat Furlong, PPMD

12:40-1:00       Muscular Dystrophy Association (MDA) Report
                      Paul Muhlrad, MDA

1:00-1:30        Open Discussion: Other Issues on the Action Plan for the Muscular Dystrophies

MDCC Partnering

1:30-1:50         MDCC Partnering Opportunity—Muscular Dystrophy Workforce Needs
                      Glen Nuckolls, NIAMS

1:50-2:20         MDCC Partnering Opportunity—Fields Center for FSHD and N-M Disease
                      Rabi Tawil, University of Rochester

2:20-2:50         MDCC Partnering Opportunity—Translational Research in Europe—Assessment
                      and Treatment of  Neuromuscular Disease (TREAT-NMD) and the MRC Centre
                      for Neuromuscular Disease
                      Stephen Lynn, TREAT-NMD

2:50-3:10         Break

3:10-3:30        MDCC Partnering—Recent Successes and Exploiting Opportunities
                     John Porter, NINDS

3:30-3:50        Changes in NIH Disease Coding Procedures
                     Tim Hays, NIH

3:50-4:15        Public Comment Session

4:15               Adjourn