MDA Engage offers neuromuscular disease updates, connections
Symposiums set for locations including Atlanta, Dallas
The Muscular Dystrophy Association (MDA) is providing neuromuscular disease (NMD) patients and their families with the opportunity to meet experts and other people on similar journeys through its Engage Symposiums, free in-person events that include disease-specific sessions as well as talks focusing on NMDs in general.
The association is offering several symposiums this year, with one scheduled for Oct. 5 in Atlanta. Registration is required for the events, which average about 100 attendees.
A primary goal of the Engage events is to share information that helps patients, caregivers, and friends, with clinicians giving updates on treatments and topics such as specialized equipment and nutrition.
“We provide information that’s up to date and actionable that patients and their families can take and make changes in their lives,” Marissa Lozano, MDA’s director of community education, told Muscular Dystrophy News. “We help them to advocate for themselves and overcome barriers.”
The MDA, which works to accelerate research, advance care, and advocate for families affected by diseases such as muscular dystrophy and amyotrophic lateral sclerosis (ALS), offers the events to provide NMD community members with the opportunity to share stories and coping strategies.
“Often, it’s the only time they’ve met someone else with their disease,” Lozano said.
Face to face with experts
Each Engage Symposium features a keynote speaker and a general session covering topics of interest to NMD patients, such as exercise and health insurance. There’s also the chance to pose questions to clinicians.
“It’s not often that you can have that face to face with experts,” Lozano said. “They spend a lot of time answering each person’s questions.”
Agenda topics are developed collaboratively with MDA and the event chairs or co-chairs, and are largely based on MDA community surveys taken throughout the year, along with feedback from the organization’s roundtable discussions. “We’re always asking after programs what topics people need, what they’re most interested in,” Lozano said.
Popular topics are those that pertain to living with an NMD, such as mental health, nutrition, exercise, specialized equipment, and transitioning from childhood to adulthood while living with a neuromuscular condition, she said. “Disease-specific topics are always popular, because people always want to learn about their diagnosis. But they also want to know how to live with their disease every day.”
The Atlanta symposium will include presentations on research and clinical trials, as well as sessions on ALS, Duchenne muscular dystrophy (DMD), and Becker muscular dystrophy (BMD).
Speakers will include co-chairs Jun Ho Kim, MD, a pediatric neurologist at Children’s Healthcare of Atlanta, and Jonathan Glass, MD, a professor of neurology and pathology at Emory University.
The Atlanta symposium will be followed Nov. 2 by one in Stanford, California, which will provide updates on all neuromuscular diseases, including spinal muscular atrophy (SMA), myasthenia gravis (MG), and limb-girdle muscular dystrophy.
Other disorders to be covered include myotonic dystrophy, Charcot-Marie-Tooth disease, Pompe disease, Lambert-Eaton myasthenic syndrome, Friedreich’s ataxia, and facioscapulohumeral muscular dystrophy.
MDA Engage aims for central locations
There are two symposiums planned for Nov. 9: one in Irvine, California, which will focus on MG, Pompe disease, SMA, and myositis, and the other in Dallas that will offer sessions on ALS, DMD, BMD, myotonic dystrophy, and ultra-rare NMDs.
Exhibitor booths staffed by sponsors and community organizations will showcase resources for patients and their families at all events.
The first Engage Symposium was held in 2017, although the organization had been holding versions of the event for decades. The symposiums were virtual during the pandemic, and returned to in-person events last year, Lozano said.
Speakers are generally part of the Care Center Network, which provides specialized NMD care.
MDA chooses the symposium site locations in part for their proximity to one of the organization’s 150-plus care centers, which are usually near relatively large NMD populations.
“We look for places that are more central to travel to, and whether we’re spreading them out enough,” Lozano said.
People will travel to attend the events. Last year, a patient from Ohio went to a Minneapolis symposium “just to meet another person with their diagnosis and hear from experts in the field,” Lozano said.
While MDA does not pay for travel, it does provide stipends when possible. Those interested in learning more can email the association.
Lozano said she felt “very privileged” for the opportunity to run the symposiums.
“I want [attendees] to walk away feeling like they have a clear understanding of what’s next in their journey, how to reach life goals, and have the feeling that they’re connected to a bigger community,” she said.
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