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Innovations in Care

We provide programs and services that transform the lives of people affected by neuromuscular disease.

2019 MDA Engage Myotonic Dystrophy Symposium

Saturday, November 9, 2019MDA Engage Logo
Registration: 8:00-9:00 AM
Event: 9:00 AM-4:00 PM (lunch included)
Social Event: Beginning at 4:00pm

Event Chair: Dr. Charles A. Thornton, University of Rochester

Event Location:
Hilton Garden Inn
30 Celebration Dr.
Rochester, NY 14620

There is no cost to attend the event, however, registration is required.

Registration Closed

Keynote Speaker:  Dr. Charles A. Thornton, Neurologist at University of Rochester

  • Research Panel
    • Opportunities to obtain better treatments in myotonic dystrophy
    • Current research studies on myotonic dystrophy
    • Presenters:
      • Dr. Charles Thornton, Professor of Neurology & Director, Wellstone Muscular Dystrophy Specialized Research Center
      • Jeanne Dekdebrun, Research Coordinator University of Rochester Medical Center
  • Best Practices in Clinical Care
    • Clinical Care in DM1
      • Presenter: Dr. Chad Heatwole, University of Rochester Medical Center
    • DM2 with a genetic component
      • Presenter: Dr. Johanna Hamel, Department of Neurology University of Rochester Medical Center
    • Clinical care for pediatrics
      • Presenter: Dr. Emma Ciafaloni, Department of Neurology University of Rochester Medical Center
    • Physical therapy and exercise for individuals with Myotonic Dystrophy
      • Presenter: Dr. Katy Eichinger, PT, PhD, NCS, University of Rochester
  • Considerations for families: working with care agencies
    • Linnaea Nifong, LMSW UR Medicine- Strong Memorial Hospital
  • ABLE Accounts: what you need to know
    • Evelyn Exman - Planning Specialist, Future Care Planning Services
  • MDA Spotlight
    • Sarah Fewkes, Care and Clinical Services Specialist- MDA

Overnight Accommodations
Discounted room rates of $142 per night (plus fees and taxes) are available at the Hilton Garden Inn at 30 Celebration Dr. in Rochester, NY. Discounted rooms are available until 10/25/19. To reserve one of these rooms, please click here.

For questions reach out to: mdaengage@mdausa.org | 1-833-ASK-MDA1 (1-833-275-6321)