2011 One Voice Advocacy Summit Agenda February th, 2011 Washington, DC ADVOCACY TRAINING

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1 ADVOCACY TRAINING Sunday, February 13 12:00 PM 1:00 PM Registration for Advocacy Conference/Duchenne Summit Washington Marriott (Nearest Metro Station: Dupont Circle Red Line; Foggy Bottom - Orange and Blue Lines) (Light lunch available from 12 2 pm) 1:00 PM 6:00 PM Advocacy Conference Training (required for all advocates) 1:00 PM 1:15 PM Welcome to Advocacy Day 1:15 PM - 2:00 PM One Voice Advocacy Summit overview 2:00 PM 2:20 PM Importance of Being an Advocate Susan Sweat, Legislative Director, Senator Wicker (R-MS) 2:20 PM 3:00 PM 2011 Federal Advocacy Agenda Briefing Ryan Fisher, Director of Community Outreach and Advocacy Dave Zook, Chair, B&D Consulting Sara Weir, Vice President, B&D Consulting 3:00 PM 3:15 PM Break 3:15 PM 4:15 PM Soapbox Presentation 4:15 PM 4:45 PM Distribution of Schedules, State Delegation Discussions 4:45 PM 5:15 PM Wrap Up/Questions 5:15 PM - 5:30 PM Mini-Session for Advocates Meeting with Appropriators* 5:30 PM 6:00 PM Mini-Session for New Advocates NOTE: Advocates will be on their own for dinner. As we have in the past, we will provide heavy snacks and beverages throughout the day. 1 P a g e

2 ONE VOICE SUMMIT Newseum and Knight Conference Room 555 Pennsylvania Ave, NW Monday, February 14 7:00 AM 8:00 AM Breakfast - Washington Marriott at Metro Center (Travel to Newseum from Hotel) 8:00 AM 8:30 AM Registration for DMD Summit 8:30 AM 9:00 AM One Voice Summit Welcome 9:00 AM 10:45 AM Panel One: The Duchenne Families' Perspective Elizabeth McNeil Moderator 10:45 AM 11:00 AM BREAK It is crucial for researchers, clinicians, and government officials to understand whether the needs of families with Duchenne are being met, and where more support is warranted. Families of boys across the spectrum of age will come together to provide insight into each families' experiences and concerns. What concerns families most when they look at the future with boys living with Duchenne? What quality of life issues and secondary conditions merit the most attention from the scientific community? What risks are acceptable when encouraging clinical research? Panelists Catherine Collins, New York, Parent of Dylan, newly diagnosed Michael Lee, Colorado, Parent of Christopher Jill Castel, Arizona, Parent of Anthony, currently in clinical trial Anessa Fehsenfeld, Michigan, Parent of Tyler Chuck Reisback, North Carolina, Parent of Charlie Conrad Reynoldson, Washington, age 24, living with Duchenne 11:00 AM 12:45 PM Panel Two: Quality of Care, Quality of Life Dave Zook, Chair, B&D Consulting - Moderator 2 P a g e

3 12:45 PM 1:15 PM Break to pick up lunch Federal support and attention for improvements to support enhanced quality of care for people living with Duchenne has increased greatly in the last ten years. This panel will ask several important questions about the continuation of this support and what improvements need to be made to provide boys living with Duchenne the best possible care. Has the Centers for Disease Control & Prevention's (CDC) care considerations been effective? What has the community learned from the MD STARnet? What progress has been made on the diagnostic front, looking specifically at infant screening, molecular diagnostics, and natural history studies? What gaps still exist in these areas? What investments need to be made, and how should these investments be prioritized? Panelists Gloria Krahn, PhD, MPH Director, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Kate Bushby, MD TREAT-NMD Coordinator, Center for Neuromuscular Diseases Kathryn Wagner, MD, PhD Director, Center for Genetic Muscle Disorders, Kennedy Krieger Institute, Associate Professor, for Neurology and Neuroscience, Johns Hopkins School of Medicine Craig McDonald, MD - Professor, University of California, Davis Health System Committee Jerry Mendell, MD Director, Center for Gene Therapy at the Research Institute at Nationwide Children s Hospital Katherine Matthews, MD Director, Division of Pediatric Neurology, University of Iowa Children s Hospital Jen Garofalo, Parent of Danny, age 8 years old 1:15 PM - 2:00 PM LUNCH SESSION KEYNOTE: The New Congress What this means for Duchenne? Joel Wood, Foundation to Eradicate Duchenne 2:00 PM 4:00 PM Panel Three: The NIH Research Plan on Duchenne Debra Lappin, Senior Vice President, B&D Consulting - Moderator The Muscular Dystrophy Research and Education Plan for the National Institutes of Health (NIH) was completed over six years ago. What has been accomplished from the NIH plan? What gaps still exist today from the plan? What does the future for research and commercialization look like when considering the goals set out in the plan? 3 P a g e

4 Members of the entire Duchenne community were intricately involved in the creation of the plan. Today, are research infrastructure needs (i.e., access to biological materials, improved imaging methods) being met? Has the understanding of the benefits and optimal dosing of steroids improved? What role does basic science play in innovation? What research disparities exist across the age spectrum? Government Support for Muscular Dystrophy - Subpanel A John Porter, PhD - Program Director, Extramural Research Program, National Institute of Neurological Disorders and Stroke Glen Nuckolls, PhD - Health Scientist Administrator, Division of Musculoskeletal Diseases, National Institute of Arthritis and Musculoskeletal and Skin Diseases Anne Pariser, MD - Associate Director for Rare Diseases, Office of New Drugs, Center for Drug Evaluation and Research, U.S. Food and Drug Administration Achieving Innovation for the Duchenne Community - Subpanel B Jasbir Seehra, PhD Robert McDonald, MD Parent/Board Member, PPMD Se-Jin Lee, MD, PhD - Professor, Johns Hopkins University School of Medicine Molecular Biology and Genetics Department Chris Garabedian President and Chief Executive Officer, AVI BioPharma Eric Hoffman, PhD - Center Director, Center for Genetic Medicine Research, Children's National Medical Center 4:00 PM 5:00 PM Wrap Up Discussion H. Lee Sweeney, PhD, PPMD Senior Scientific Advisor 5:30 PM 7:30 PM Post-Summit Reception (Newseum) 4 P a g e

5 ADVOCACY DAY Tuesday, February 15 7:00 AM 8:30 AM Breakfast - Washington Marriott at Metro Center (Travel to Capitol Hill) 9:00 AM 4:30 PM Congressional Meetings House and Senate members from your state delegation as designated in your schedule 4:30 PM Depart Washington 5 P a g e

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