FAQ

• Is this event really for me?

  If neuromuscular disease is part of your life, MDA Engage is designed for you. That includes people living with a diagnosis, family members, caregivers, and anyone trying to better understand what support is available.

• What if I already know the basics?

  That’s okay. Engage isn’t only for people who are newly diagnosed. It’s a chance to hear current information, ask new questions, and learn about care, resources, and daily-life topics that may become more relevant over time.

• What if I don’t know what I need yet?

  You don’t have to. Many people attend because they’re trying to figure out what questions to ask, what options to explore, or what support may help now or later.

• Besides learning information, what other benefits are there to attending Engage?

  According to previous attendees, the biggest benefit of attending Engage is the connections you will make with others who are living with neuromuscular disease. You will have opportunities to share experiences with those who understand what it is like to navigate life with a neuromuscular disease and to connect with other patient advocacy organizations to build your support network.

• Can I bring someone with me?

  Yes. Family members and caregivers are welcome. Just make sure each person registers so we can plan for the right number of attendees.

• Do I have to be an MDA Care Center patient?

  No. MDA Engage is open to the neuromuscular disease community, whether or not you currently receive care at an MDA Care Center.

• Will I be able to ask questions?

  Yes. Engage events include time for questions, conversations, and expert-led discussions.

• What if my/my loved one’s diagnosis isn’t specifically listed in the agenda? Will any of the content be relevant for me?

  Yes. Engage events are designed to be relevant for all diagnoses by offering sessions on topics such as nutrition, exercise, navigating insurance, mental wellness, and more. The content and speakers are carefully selected to ensure there is something for everyone.

• Is there a cost to attend?

  No. MDA Engage events are free, but registration is required.

• Is childcare available?

  Children are welcome to attend, but we cannot offer childcare at this time. We will have quiet activities on hand such as coloring pages, puzzles, and books, but children will need to stay with their caregiver. Teens living with a neuromuscular disease are encouraged to attend. They may find it helpful to learn from and connect with others in the community.

• I’d like to attend, but I cannot afford the cost to travel. Is there any assistance available?

  Yes. MDA understands the cost to travel may be a barrier and is pleased to offer a limited number of travel stipends to help overcome that barrier. To learn more and receive a link to a short application, please email mdaengage@mdausa.org.

• What if I need accommodations?

  All locations are chosen with accessibility in mind. Please share any accessibility needs when you register and MDA will follow up as needed.