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MDA Virtual Learning: FSHD - Updates in Research

Tuesday, June 4, 2024
Event Time: 3:00-4:00PM EST
Live, Virtual Event

This MDA webinar will discuss updates on the status of current research in FSHD, current care and treatment approaches for FSHD as well as information and resources to help FSHD patients make informed decisions about their care.

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The featured presenter of this webinar is Rabi Tawil, MD; Professor of Neurology Pathology and Laboratory Medicine at University of Rochester Medical Center.

Dr. Tawil is a professor of Neurology with expertise in Neuromuscular disorders with a special focus on clinical research on FSHD to help understand the causes of FSHD to help develop treatments. Dr. Tawil worked closely with two scientists, Dr. Stephen Tapscott, MD, PhD, from Seattle and Silvere van der Maarel, PhD, from the Netherlands to confirm that inappropriate expression of the DUX4 protein is the cause of FSHD in 2010. Currently, Dr. Tawil, along with Dr. Jeff Statland, are studying the natural history of FSHD to help design current and future FSHD trials.

Headshot of a man in a suit with gray hair.
Rabi Tawil, MD; Professor of Neurology Pathology and Laboratory Medicine at University of Rochester Medical Center

Attendees will have the opportunity to ask questions during the live Q&A.

There is no cost to members of the MDA community or healthcare providers to attend the event, however registration is required. Members of the biopharma industry interested in sponsoring or attending should contact the MDA Healthcare Partnerships team at For all other questions, please reach out to

Unable to attend on June 4th 2024? This webinar will be recorded for on-demand viewing. Please continue with registering even if you cannot attend to ensure you receive an email with the link to the recording. The recording will be available approximately 3-4 weeks after the live program.

If you have questions about this webinar or other Community Education programs, please reach out to the MDA Resource Center at 1-833-ASK-MDA1 (275-6321) or

Special thanks to our webinar supporters:

  • Avidity Biosciences
  • Fulcrum Therapeutics