Five Things You’ll Find at MDA Engage

Some events are hard to picture before you attend. You may wonder who will be there, whether the topics will apply to you, or if it is worth carving out the time.

MDA Engage is designed for people living with neuromuscular disease, families, caregivers, and loved ones who want practical information, real conversation, and a chance to connect with people and resources in the neuromuscular disease community.

Whether you are newly diagnosed, years into this experience, supporting someone you love, or looking for what might be helpful next, here are five things you can expect to find at an MDA Engage event.

1. Answers to questions you may not know how to ask yet

Living with a neuromuscular disease can come with questions that are hard to name at first.

You may be trying to understand a diagnosis, think through a care decision, prepare for a transition, explore equipment, or figure out what kind of support might be useful for you or your family as life with an NMD progresses and evolves.

MDA Engage can help put language around some of those questions. Through sessions, conversations, and shared discussion, you’ll hear information that makes the next question clearer and helps make the path ahead feel a little easier to sort through.

2. Experts who understand the neuromuscular disease community

MDA Engage brings you together with speakers and professionals who understand neuromuscular disease and the many ways it can affect care, planning, daily routines, and family life.

You’ll hear from various experts, including clinicians, researchers, therapists, care specialists, resource providers, and others with experience supporting the neuromuscular disease community. Their perspectives can help explain complex topics in a way that feels clearer and more connected to real life.

These sessions are not meant to replace your own medical care. Instead, they can help you better understand topics to discuss with your care team, questions to ask, and resources that may be worth exploring.

3. Connecting with other people who get it

Neuromuscular diseases are rare, and that can make it harder to find people who understand what daily life, caregiving, planning, or decision-making can look like.

At MDA Engage, you’ll connect with other people living with neuromuscular disease, parents, spouses, siblings, caregivers, loved ones, and families who have asked similar questions or navigated similar situations.

Sometimes that connection happens during a session. Sometimes it happens over lunch, at an exhibitor table, or in a quick conversation between presentations. Either way, there is a quiet relief in not having to translate your experience for the room.

4. Resources, tools, and ideas to explore

MDA Engage brings together more than speakers and sessions. You’ll also have a chance to meet with exhibitors offering resources, tools, services, and information designed with the neuromuscular community in mind.

You can ask questions directly, see what’s available, and hear what other attendees are asking too. You may discover something new, compare options, or get a better sense of what could be useful for you or your family.

5. A day that meets you where you are

You don’t need to have it all figured out before you attend MDA Engage.

You may be newly diagnosed. You may have been part of the neuromuscular disease community for years. You may be a parent, spouse, sibling, adult child, friend, or caregiver. You may come with a list of questions, or you may simply want to learn what’s available.

Wherever you are, MDA Engage offers a welcoming space to learn, connect, and focus on the information and conversations that matter most to you.

2026 Dates and Locations

• July 18, 2026: Hershey, PA

Hershey Lodge: 325 University Drive Hershey, PA 17033

Register here

• September 25-26, 2026: Lombard, IL

The Westin Chicago Lombard: 70 Yorktown Shopping Center Lombard, IL 60148

Register here

• October 23-24, 2026: Dallas, TX

Renaissance Dallas Hotel: 2222 N Stemmons Fwy Dallas, TX 75207

Register here

• November 7, 2026: Stanford, CA

Li Ka Shing Learning & Knowledge Center at Stanford University

291 Campus Drive Stanford, CA 94305

Register here

Support for travel

Travel stipends are available: If the cost to travel is a barrier to attending Engage, MDA is offering a limited number of travel stipends to help offset the costs. To learn more and receive a link to a short application, please email mdaengage@mdausa.org.

Ready to Engage?

Visit MDA.org/Engage to reserve your spot.