Myotonic Dystrophy Foundation

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Conference Video Archive

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Friday, December 2, 2011

6:00 - 9:00 PM - Cocktail Welcome Reception & Early Registration

Saturday, December 3, 2011

Understanding Myotonic Dystrophy

7:00 AM: Childcare Opens
7:00 - 8:30 AM: Check-In and Self-Serve Continental Breakfast
8:30 - 11:30 AM: Conference Welcome and DM 101 Sessions

• Conference Welcome | 
  Lisa Harvey, Executive Director, MDF
• Myotonic Dystrophy: A 40 Year Perspective | 
  Peter S. Harper, M.D., University Research Professor (Emeritus), Cardiff University
• The Spirit of Difference  |
  Rick Guidotti, Director, Positive Exposure
• DM 101: Introduction to Myotonic Dystrophy  |
  Darren Monckton, B.Sc., Ph.D., University of Glasgow
• DM 101: Genetics and Biology |  | Joint Q&A Session  |
  Katharine Hagerman, Ph.D., University of Rochester Medical Center
• DM 101: Clinical Research | | Q&A Session  |
  Nicholas Johnson, M.D., University of Rochester Medical Center
• DM 101: Studies & Trials - Managing Expectations  |  | Q&A Session  |
  Nicholas Johnson, M.D., University of Rochester Medical Center

11:30 - 2:00 PM: Group Lunch with IDMC Participants (Childcare closed during lunch)
2:00 - 6:15 PM: Joint session with IDMC Participants, Moderator: Darren Monckton, B.Sc., Ph.D., University of Glasgow

• Disease Mechanism Highlights | 
  Mani Mahadevan, M.D., FRCP, University of Virginia
• Clinical Science Highlights | 
  Tetsuo Ashizawa, M.D., University of Florida
• Therapy Highlights | 
  Andrew Berglund, Ph.D., University of Oregon
• Q&A with Families, Researchers and Clinicians Part 1 |  | Part 2 |
  Moderator: Valerie Cwik, M.D., MDA

4:30 - 5:45 PM: The DM Patient Voice: Unmet Needs and Moving Therapies Forward, Moderator: John Porter, Ph.D., NINDS (NIH) | 

• Congenital Myotonic Dystrophy | 
  Lisa Harvey, Executive Director, MDF, Family
• Juvenile Onset Myotonic Dystrophy | 
  Shannon Lord, Founding Chairman, Board of Directors, MDF, Family
• Adult Onset Myotonic Dystrophy | 
  John Brekka, Vice-Chairman, Board of Directors, MDF, Family
• Caregivers Perspective | 
  Diane Bade, MDAAASG, Family
• Bridging The Gap | Paradigm for Working Together: Dream Big |  
  Sarah Jordan, Cleveland Clinic Lerner School of Medicine, and Eric Wang, Ph.D., Harvard-MIT Health Sciences and Technology

5:45 - 6:15 PM: Steinert Award Presentations | 
7:00 - 9:00 PM: EMPOWER Conference Family Luau and Social (Dinner and Entertainment)

Sunday, December 4, 2011

Living with Myotonic Dystrophy

7:00 AM: Childcare opens
7:00 - 8:30 AM: Check-In, Self-Serve Continental Breakfast and Exhibits
7:30 - 8:15 AM: Healing Yoga Class (optional)
8:30 - 11:30 AM: Day Two Welcome and General Session Topics:

• Conference Day 2 Welcome  | 
  Lisa Harvey, Executive Director, MDF
• Becoming Your Own Health Advocate |  | Q&A Session |  |  DM1 Health supervision checklist
  Jacinda Sampson, M.D., Ph.D., University of Utah School of Medicine
• Improving Respiratory Health |  | Q&A Session | 
  Nicholas Johnson, M.D., University of Rochester Medical Center
• Managing Cardiac Care |  | Q&A Session | 
  William Groh, M.D., Indiana University Health
• Promoting Gastrointestinal Health |  | Q&A Session | 
  John Day, M.D., Ph.D., Stanford University School of Medicine
• Understanding the Brain in DM | ...coming soon | Q&A Session | 
  John Day, M.D., Ph.D., Stanford University School of Medicine
• Anesthesia and other Pharmacology |  | Q&A Session | 
  Neal Campbell, M.D., University of Pittsburgh School of Medicine

11:30 - 1:00 PM: Group Lunch and Exhibits

• Sam's Squad Marathon For Myotonic Dystrophy |  
  Jeremy Kelly, Chairman, Board of Directors, MDF

1:00 - 4:00 PM: Breakout Sessions

• Accessing Supportive Programs and Resources for Families with Disabilities | ...coming soon
  Paula Orandash, MDA
• A Caregiver Toolkit   
  Brenda Stewart and Sara Perszyk, Suncoast Hospice
• Congenital and Childhood Onset: Thriving Against All Odds |  | Q&A Session | 
  Jacinda Sampson, M.D., Ph.D., University of Utah School of Medicine
• Exercise Recommendations for Health & Fitness | Assistive Devices to Maximize Mobility & Independence |  | Q&A Session | 
  Shree Pandya, PT, DPT, MS and Katy Eichinger, PT, DPT, NCS, University of Rochester Medical Center
• Genetic Counseling | 
  Judith Ranells, M.D., University of South Florida
• Managing Myotonic Dystrophy Type 2 (DM2) |  
  John Day, M.D., Ph.D., Stanford University School of Medicine
• Planning for Your Future When Living with a Chronic Health Condition Part 1 |  | Part 2 
  Travis Finchum, ESQ, Beth W. Patterson, CPA and Lansing Roy, J.D.
• Yoga for Health and Well-being
  Lisa Stellmaker, Certified Yoga Instructor 

4:00 - 4:30 PM: Conference Closing Remarks

Print Full Conference Program (981 KB) | Print Conference Agenda (368 KB)