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MDCC August 26, 2013 Meeting Agenda

Muscular Dystrophy Coordinating Committee
Rockville, Maryland
August 26, 2013

8:30-8:50 am                      Welcome, Introductions, and Conflict of Interest Statement

                                              Alan Guttmacher, MDCC Chair, NICHD/NIH

                                              John Porter, MDCC Executive Secretary, NINDS/NIH

8:50-9:10 am                      NIH: Activities Overview

                                              John Porter, NINDS/NIH

9:10-9:30 am                      NIH: Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers

                                              Glen Nuckolls, NIAMS/NIH

9:30-9:50 am                      NIH: Newborn Screening

                                              Tiina Urv, NICHD/NIH

9:50-10:10 am                    NIH: Cardiorespiratory Issues in Muscular Dystrophy

                                              Jonathan Kaltman, NHLBI/NIH

10:10-10:30 am                  Congressionally Directed Medical Research Program

                                              Marielena McGuire, DMDRP/CDMRP/DoD

10:30-10:45 am                  Break

10:45-11:05 pm                 Public Member: Duchenne Muscular Dystrophy

                                            Brian Denger, PPMD

11:05-11:25 am                  Food and Drug Administration

                                              Anne Pariser, OND/CDER/FDA

11:25-11:45 am                  Public Member: Neuromuscular Disease

                                              Valerie Cwik, MDA

11:45-12:45 pm                 Working Lunch/Open Discussion

12:45-1:05 pm                    National Institute on Disability and Rehabilitation Research

                                             Theresa San Agustin, Dept. of Education

1:05-1:25 pm                      Public Member: Congenital Muscular Dystrophy [by telecon]

                                                Anne Rutkowski, CureCMD

1:25-1:45 pm                      Center for Disease Control and Research

                                              Mark Swanson, DHDD/NCBDDD/CDC

1:45-2:00 pm                      Public Member: Myotonic Dystrophy

                                              Peter Wald

2:00-2:30 pm                      Living with Muscular Dystrophy: Life Transitions

                                              Annie Kennedy, Muscular Dystrophy Association

2:30-2:45 pm                      Break

2:45-3:15 pm                      Clinical Trials for Pediatric Neuromuscular Disorders: Expectations & Experiences

                                              Holly Peay, Parent Project Muscular Dystrophy

3:15-4:00 pm                      Review of Planning for Update of Action Plan for the Muscular Dystrophies

                                              John Porter, NINDS/NIH Heather Rieff, NINDS/NIH

4:00-4:30 pm                      Public Comment Period

4:30 pm                                Close

Last Modified February 7, 2014