How to Get One-on-One Support From MDA

Knowing the importance of human-to-human support and guidance, MDA offers multiple ways for people in the neuromuscular disease community to connect one-on-one with MDA specialists. From answering questions about gene therapy to helping you find durable medical equipment, our specialists are ready to assist you and your family on your neuromuscular disease journey. Through MDA’s Resource Center, Connect program, Gene Therapy Support Network, and Care Centers, anyone can find the right person to guide them.

“MDA wants to be accessible and available in multiple ways based on community preference,” says Nora Capocci, Vice President of Healthcare Services at MDA. “So we offer options to email, call, or video chat. We’re here to support the community no matter where they are in their journey.”

Start here: The MDA Resource Center

Handling more than 10,000 inquiries a year, the Resource Center is known as the “front door to MDA.”

It helps individuals, family members, and caregivers find answers to their questions and can help direct them to local resources and other MDA programs. “You can call with any question,” Nora says. “If you don’t know where to start — start with the Resource Center.” And language isn’t a barrier. The Resource Center has translators available for more than 100 languages.

Resource Center specialists are dedicated and committed MDA employees from diverse backgrounds, from social workers to caring individuals with friends or family members living with neuromuscular diseases. These specialists are knowledgeable and may answer all of your questions or refer you to another MDA program. Learn about more ways to connect with MDA team members below.

The MDA Resource Center is available Monday through Friday, 9 a.m.–5 p.m. CT. Call 833-ASK-MDA1 (833-275-6321) or email ResourceCenter@mdaUSA.org. Emails are answered within a week.

Do you want to have a conversation about navigating life with a neuromuscular disease?

MDA Connect gives community members the opportunity to have a 30-minute video call with an MDA Support Specialist. These specialists can help with education, careers, accessibility, caregiving, transportation, community engagement, general disease education, other MDA programs, and more. When booking online, you can choose an appointment time, select an available specialist, and provide any notes so the specialist comes prepared with relevant guidance.

Anyone can schedule an appointment — members of the neuromuscular disease community, their family members, caregivers, and clinicians.

Call the Resource Center, or schedule your video call online.

Have more in-depth clinical questions or want a peer-to-peer connection?

MDA Support Specialists, similar to patient navigators, connect with individuals in need of more in-depth knowledge or support. These specialists offer resources and guidance but do not provide direct medical care or advice. Anyone in the neuromuscular disease community can receive this support — those living with neuromuscular diseases, their caregivers, or family members. Support Specialists can assist with a variety of requests, such as how to navigate an MDA Care Center visit, join the MDA Peer Connections Program to connect with others with a specific diagnosis, or participate in an MDA Community Group.

“Our specialists also help patients connect with anything they need after a Care Center visit,” Nora says. MDA Support Specialists are available for in-person meetings at MDA Care Centers or scheduled video calls.

MDA Support Specialists are invested in supporting the neuromuscular disease community and have a background in healthcare and/or lived experience with neuromuscular disease.

Call the Resource Center, or schedule your video call online.

Do you have questions about gene therapy?

The Gene Therapy Support Network offers community education and support to anyone eligible to receive gene therapy or who is looking to learn more, including family members or caregivers. The network offers one-on-one video calls, phone calls, or emails to talk with a Gene Therapy Support specialist about anything related to gene therapy.

“They can help you facilitate access, navigate insurance, answer general questions, and share resources or educational materials,” Nora says. “They have answered questions from those who are currently eligible and those who are curious if their disease has a gene therapy in the pipeline.”

Call the Resource Center, or schedule your video call online.