News, Living with Muscular Dystrophy

2019 MDA Engage ALS Symposium Scheduled in Boston on May 18

Jeanene Swanson
Presenters at a past MDA Engage ALS event.

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 Boston, Mass., will focus on amyotrophic lateral sclerosis (ALS). The event will be held at the Boston Marriott Quincy, 1000 Marriott Drive, and lunch will be provided. There will be a social hour at the event hotel immediately following the symposium.

“I am incredibly excited to bring together such an outstanding group of ALS experts for a forum focused on engaging, educating, and collaborating with people with ALS, their caregivers, and loved ones,” Dr. James Berry, chair of the event, says. 

The agenda includes:

Keynote: Dr. James Berry, MPH, Massachusetts General Hospital

Topic: Best Practices in Clinical Care of ALS

Speaker: Dr. Robert Brown, DPhil, University of Massachusetts Medical School

Topic: Research & Clinical Trial Review for ALS

Moderator: Dr. James Berry, MPH, Massachusetts General Hospital

Topic: Drug Development Roundtable

Speaker: John Costello, MA, CCC-SLP, University of Massachusetts Medical School and Massachusetts General Hospital

Topic: Technology & Supportive Care

Speaker: The ALS PACT Program

Topic: Mental Health Considerations

Speaker: Agency for Toxic Substances and Disease Registry (ATSDR)

Topic: National ALS Registry

Advanced registration is required. Please complete a registration form for each attendee, including children younger than 17. Visit the website to register: www.etouches.com/als2019. 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 Limb-Girdle Muscular Dystrophies (LGMD) — Virginia
  • October: Engage Becker Muscular Dystrophy (BMD) — Virtual
  • November: Engage Myasthenia Gravis (MG) — North Carolina
  • November: Engage Charcot-Marie-Tooth Disease (CMT) — Pennsylvania
  • November 9: Engage Myotonic Dystrophy (DM) — New York
  • November: Engage Duchenne Muscular Dystrophy (DMD) — California

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

The MDA Engage ALS Symposium is generously sponsored in part by AveXis, Cytokinetics, Genentech, and Mitsubishi Tanabe Pharma America.