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Muscular Dystrophy Association Opens Registration for the 2025 Family Engage Symposium in Dallas, Texas

The free full-day event on November 15 unites families, experts, and advocates for powerful in-person connections and learning about breakthroughs in gene therapy, clinical trials, pulmonary care, and tools for independence.

DALLAS, TX, Monday, June 23 – The Muscular Dystrophy Association (MDA) today announced that registration is now open for its 2025 MDA Engage Symposium, taking place Saturday, November 15 at the Renaissance Dallas Hotel. This free, in-person event brings together leading researchers, clinicians, and advocates to address the most pressing issues for people living with neuromuscular disease, including cutting-edge breakthroughs in gene therapy and clinical trials, pulmonary care innovations, nutritional support, equipment for daily living, and the critical transition to adulthood. Read the full agenda here.

Designed to foster empowerment and build community, the symposium also highlights support for caregivers and promotes independence through targeted sessions on self-advocacy, peer connection, and emerging therapies. Families living with conditions such as amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth (CMT) disease, Duchenne muscular dystrophy (DMD), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle muscular dystrophy (LGMD), myasthenia gravis (MG), myotonic dystrophy (DM), spinal muscular atrophy (SMA), and other rare neuromuscular diseases are invited to learn, connect, and access the latest in care and resources.

Featured Experts, Session Leaders, Steering Committee:

• Kaitlin Batley, MD, MDA Care Center Director, Assistant Professor at UT Southwestern, Pediatric Neurologist at Children’s Health, MDA Engage Steering Committee
• Haibi Daniel Cai, MD, Assistant Professor, Physical Medicine and Rehabilitation, Neurologist at UT Southwestern Medical Center, MDA Engage Steering Committee
• Zurisadai Gonzalez Castillo, MD, Assistant Professor of Pediatrics and Neurology, Pediatric Neurologist at Children’s Health
• Mark Fisher, Director, Advocacy Engagement, MDA, MDA Engage Steering Committee
• Anne Gilmore, PhD, RD, LD, Assistant Professor, Department of Clinical Nutrition, UT Southwestern
• Melissa Grove, MDA Advocate and Community Member
• Daragh Heitzman, MD, FAAN, MDA/ALS Care Center Director at Texas Neurology, MDA Engage Steering Committee
• Mindy Henderson, Vice President, Disability Outreach and Empowerment, MDA, and Editor in Chief of MDA’s Quest Media, MDA Community Member
• Shaida Khan, DO, Associate Professor of Neurology at UT Southwestern Medical Center, Medical Director of the Neurology Ambulatory Clinic at Parkland Hospital
• Victoria Love, LMSW, Social Worker, Texas Neurology
• Bethany Lussier, MD, Associate Professor of Internal Medicine; Director of Neuromuscular Pulmonology and Home Ventilation Clinic at UT Southwestern
• Katie Metheny, OTR/L, Occupational Therapist, Texas Neurology
• Matt Plummer, MDA Community Member, MDA Board of Directors, MDA Engage Steering Committee
• Jenny Riecke, MD, Neurologist, UT Southwestern
• Tom Simon, ATP, Numotion, MDA Board Member, MDA Engage Steering Committee
• Michael E. Shy, MD, MDA Care Center Director, Carver College of Medicine Endowed Chair in Inherited Neuropathies, Director, Division of Neuromuscular Medicine, Neurology Director, Division of Neurogenetics, Professor of Neurology, Professor of Pediatrics, Professor of Molecular Physiology and Biophysics, University of Iowa
• Matthew Wicklund, MD, MDA Care Center Director, Professor of Neurology and Vice Chair for Research at UT Health San Antonio

“The MDA Engage Symposium offers something truly unique, a space where families and people living with neuromuscular disease can connect directly with experts, ask questions, and gain a deeper understanding of their care,” said Dr. Kaitlin Batley, MDA Care Center Director and Assistant Professor at UT Southwestern, Neurologist at Children’s Health, and member of the MDA Engage Steering Committee. “It’s incredibly meaningful to be part of an event that brings scientific researchers, clinical care professionals, and the community together to empower families at every stage of their journey. Muscular Dystrophy Association is uniquely positioned as the convening organization for this community, working together to accelerate progress.”

The keynote address will be delivered by Mindy Henderson, Vice President of Disability Outreach and Empowerment for MDA. Mindy also serves as MDA’s Editor-in-Chief of Quest Media, is a motivational speaker, and a person living with spinal muscular atrophy (SMA). "This event is more than education; it’s about being seen, heard, and supported," said Henderson. "Living with SMA, I know how transformative it is to connect with people who understand your reality. The Muscular Dystrophy Association Engage Symposium is where those connections happen, where information turns hope into action, and where community is empowered."

Topics:

• Breakthroughs in gene therapy and clinical trials
• Pulmonary care for neuromuscular disease
• Equipment and support for activities of daily living
• Nutrition for neuromuscular disease
• Transitioning to adulthood and fostering independence
• Caregiver resources and peer support
• Community advocacy and empowerment

Attendees will enjoy a full day of immersive sessions on Saturday, November 15, including access to expert guidance, disease-specific discussion groups, and community-based resources. The day will culminate with a networking reception, providing opportunities to connect socially with others. The event is designed for families at every stage of the neuromuscular journey, from diagnosis through adulthood, and will provide tools and strategies to navigate the road ahead.

“Whether you're a parent, clinician, adult living with neuromuscular disease, or lifelong caregiver, the MDA Engage Symposium in Dallas will offer something for you,” said Alicia Dobosz, Executive Vice President, Community Engagement, MDA. “Being together offers such value for our community, and this event will be a place to learn, share, and feel a sense of belonging.”

Details:

• Cost: FREE (registration required)
• Registration: HERE
• Travel: Families may apply for travel support HERE
• Join MDA: This event is open to people in the neuromuscular community who have signed up at no cost to join MDA
• Register: HERE
• Agenda: HERE

“Bringing the community together for education and connection is an important part of MDA’s mission. Our Engage Symposium offers opportunities to connect with resources, converse with experts, and be part of meaningful conversations that reflect your experiences and needs," said Marissa Lozano, Director, Community Education, MDA.

Thank you to our Empowerment sponsors Alexion Pharmaceuticals, Evernorth Health Services, and ITF Therapeutics and to our Champion sponsors Amgen, Biogen, Catalyst Pharmaceuticals, Johnson & Johnson, Mitsubishi Tanabe Pharma America, Novartis, and Regeneron.

Media contact press@mdausa.org.

Upcoming MDA Engage Symposium

MDA is partnering with Stanford Medicine for an MDA Engage Symposium on Saturday, November 22, 2025, at the Li Ka Shing Learning and Knowledge Center in Stanford, CA. People living with neuromuscular disease and their caregivers are invited to participate in a full day of learning sessions, panel discussions, and networking. Registration is free. Learn more and register here.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube

About Muscular Dystrophy Association’s 75^th Anniversary

In 2025, the Muscular Dystrophy Association proudly marks 75 years legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders. Learn more at MDA75.org.