News, Living with Muscular Dystrophy

2019 MDA Engage LGMD Symposium Scheduled in Richmond on May 18

Jeanene Swanson

At MDA, we believe in the power of research and the importance of building relationships among families, clinicians, and the scientists making discoveries to advance treatments and therapies. We invite individuals living with a neuromuscular disease, as well as caregivers and loved ones, to attend MDA Engage symposia taking place across the country.

MDA Engage symposia are one-day events empowering individuals and families with knowledge and resources. Experts in the field of neuromuscular disease share information on topics such as best practices in clinical care, research and clinical trials, genetic information, and more. All MDA Engage events include dedicated social time to give families the opportunity to connect.

An upcoming MDA Engage symposium slated for May 18 in Richmond, Va., will focus on limb-girdle muscular dystrophy (LGMD). The event will be held at the Hilton Garden Inn Richmond Innsbrook, 4050 Cox Road, Glen Allen, Va., and lunch will be provided. There will be a social hour at the event hotel immediately following the symposium.

“The MDA ENGAGE event will be a wonderful opportunity for patients, their families, and the community to hear from leading experts in LGMD about current research, genetics, the importance of the care center, and many other topics,” Dr. Scott Vota, chair of the event, says. “They will be able to ask questions throughout the day. It will be an important day as the MDA continues to work on connecting on a deeper level with patients.”

The agenda includes:

Keynote: Nicholas Johnson, MD, MS-CI, Virginia Commonwealth University

Topic: Research Updates in LGMD

Speaker: Anne Connolly, MD, Nationwide Children’s Hospital

Topic: LGMD: Which Proteins are Not Working?

Speaker: Chelsea Chambers, MS, LCGC, Virginia Commonwealth University

Topic: LGMD Genetics 101

Moderator: Scott Vota, DO, Virginia Commonwealth University

Topic: Best Practices in Clinical Care Roundtable Discussion

Moderator: Scott Vota, DO, Virginia Commonwealth University

Topic: Drug Development Roundtable

Register in advance only. Please complete a registration form for each attendee, including children younger than 17. Visit the website to register. There is no cost to attend.

In 2019, MDA will host symposia in locations across the country, each focused on a different disease. We hope you will join us at one.

Past MDA Engage symposia:

  • April 12: Engage Spinal Muscular Atrophy (SMA) — Florida

Upcoming MDA Engage symposia:

  • May 18: Engage Amyotrophic Lateral Sclerosis (ALS) — Massachusetts
  • October: Engage Becker Muscular Dystrophy (BMD) — Virtual
  • November: Engage Myasthenia Gravis (MG) — North Carolina
  • November: Engage Charcot-Marie-Tooth Disease (CMT) — Pennsylvania
  • Nov. 9: Engage Myotonic Dystrophy (DM) — New York
  • November: Engage Duchenne Muscular Dystrophy (DMD) — California

Check mda.org/care/mda-engage for the latest list, and email mdaengage@mdausa.org with questions.

The MDA Engage LGMD Symposium is generously sponsored in part by Sanofi Genzyme.