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Muscular Dystrophy Coordinating Committee Agenda


August 26, 2013 
Rockville, MD

AGENDA 

8:00 - 8:50 a.m.
Welcome, Introductions, and Conflict of Interest Statement
Alan Guttmacher, MDCC Chair, NICHD/NIH
John Porter, MDCC Executive Secretary, NINDS/NIH
8:50 - 9:10 a.m.
NIH: Activities Overview
John Porter, NINDS/NIH
9:10 - 9:30 a.m.
NIH: Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers
Glen Nuckolls, NIAMS/NIH
9:30 - 9:50 a.m.
NIH: Newborn Screening
Tiina Urv, NICHD/NIH
9:50 - 10:10 p.m.
NIH: Cardiorespiratory Issues in Muscular Dystrophy
Jonathan Kaltman, NHLBI/NIH
10:10 - 10:45 a.m.
Congressionally Directed Medical Research Program
Marielena McGuire, DMDRP/CDMRP/DoD
10:30 - 1045 a.m.
Break
10:45 - 11:05 a.m.
Public Member: Duchenne Muscular Dystrophy
Brian Denger, PPMD
11:05 - 11:25 a.m.
Food and Drug Administration
Anne Pariser, OND/CDER/FDA
11:25 - 11:45 a.m.
Public Member: Neuromuscular Disease
Valerie Cwik, MDA
11:45 - 12:45 p.m.
Working Lunch/Open Discussion
12:45 - 1:05 p.m.
National Institute on Disability and Rehabilitation Research
Theresa San Agustin, Dept. of Education
1:05 - 1:25 p.m.
Public Member: Congenital Muscular Dystrophy [by telecon]
Anne Rutkowski, CureCMD
1:25 - 1:45 p.m.
Center for Disease Control and Research
Mark Swanson,DHDD/NCBDDD/CDC
1:45 - 2:00 p.m.
Public Member: Myotonic Dystrophy
Peter Wald
2:00 - 2:30 p.m.
Living with Muscular Dystrophy: Life Transitions
Annie Kennedy, Muscular Dystrophy Association
2:30 - 2:45 p.m.
Break
2:45 - 3:15 p.m.
Review of Planning for Update of Action Plan for the Muscular Dystrophies
John Porter, NINDS/NIH Heather Rieff, NINDS/NIH
4:00 - 4:30 p.m.
Public Comment Period
4:30 p.m.
Close

Last updated January 6, 2014