Care and Connection That Matter

2019 MDA Engage Myotonic Dystrophy Symposium

Saturday, November 9, 2019
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)