Local November 9th MDA Disease Education Events Span East, West Coast

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by BNS Staff |

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The Muscular Dystrophy Association’s (MDA) efforts to support and advocate for a wide range of neuromuscular diseases are felt by patient communities nationwide. While the MDA’s scope is indeed a national one, the organization reaches patients and families in a variety of different ways, including local events such as the MDA Engage Disease Symposia series, which gets started on November 9, 2019.

Presented by specialists who are proven experts in neuromuscular diseases, the MDA has designed these educational one-day events to provide patients and their families with the information and resources they need to better understand and manage their health and lifestyle. Additionally, the events offer a unique opportunity for patients and families to network with others in their local area and make valuable social connections.

The following symposia are being offered on Saturday, November 9th:

2019 MDA Engage Duchenne Muscular Dystrophy Symposium

Saturday, November 9, 2019
Symposium: 9:00 AM – 3:30 PM (lunch provided)
Social Event: 3:30 – 4:30 PM

Event Location:
Hilton Sacramento Arden West
2200 Harvard Street, Sacramento, CA 95811

Event Chair: Erik K. Henricson, Ph.D., M.P.H., UC Davis Health

The program for this event will feature a comprehensive look at a variety of valuable topics for DMD patients and families, including an overview of the latest research and drug development, best practices in clinical care, genetic testing and pediatric to adult health management transition. Each of these areas of discussion will be led by panels of experts in their respective fields, all of which will contribute to a drug roundtable discussion as well.

Registration for the event is free, but attendees are asked to register ahead of time here.

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

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

The MDA Engage Symposium will feature seven different specialties who will explore a range of topics related to myotonic dystrophy, including best practices in clinical care, such as clinical care in DM1, DM2 with a genetic component, clinical care for pediatrics, and the value of physical therapy; a family-focused presentation on care agencies; what families need to know about ABLE accounts; and an MDA Spotlight featuring Sarah Fewkes, Care and Clinical Services Specialist at the MDA.

More information about free registration for the even can be found here.

2019 MDA Engage CMT Symposium

Saturday, November 9, 2019
Registration: 8:00am
Event: 9:00am-4:30pm (lunch included)
Social Event: 4:30-5:30pm

Event Location:
Sheraton Philadelphia University City Hotel
3549 Chestnut Street
Philadelphia, PA 19104

Event Chair: Dr. Steven Scherer, Ph.D., Neurologist, Hospital of the University of Pennsylvania

The MDA’s Engage Symposium for Charcot-Marie-Tooth disease will offer presentations on CMT-specific topics led by a team of specialists from leading Philadelphia-area medical institutions such as University of Pennsylvania hospital and Children’s Hospital of Philadelphia, as well as other top medical and research facilities. Topics will include a research and clinical trials update; a genetics and CMT overview; presentations on orthotics, physical therapy, and occupational therapy; best practices in clinical care for the disease; and a roundtable/Q&A session.

Prospective attendees can register for free here.

As the MDA continues to supports patients and families across the country through their local educational symposia, Muscular dystrophy News will continue to keep our readers up to date on events as they are posted.