How MDA Can Support You
By Jason Henninger | Monday, February 12, 2024
Throughout our more than 70-year history, engaging with individuals and families affected by neuromuscular disease and building a sense of community have been at the heart of MDA’s mission.
As MDA has continued to grow and evolve along with our community, the ways we support our families have grown. Here are some of the ways you can engage with and receive support from MDA.
This is the starting place for anyone who has a new diagnosis, is new to MDA, or is looking for support at any point in their journey. Resource Center Specialists will walk you through how to become an MDA member and describe our programs and resources. They can also help you find information on your disease, get started with an MDA Care Center, learn about research and clinical trial opportunities, and direct you to resources and services in your community.
Contact the Resource Center at 833-ASK-MDA1 or ResourceCenter@mdausa.org.
The Advocacy program strives to ensure that legislators and others in decision-making positions craft public policies that empower the neuromuscular disease and disability communities.
“We always need more grassroots advocacy volunteers to help us achieve our public policy goals,” says Mark Fisher, MDA’s Director of Advocacy Engagement. “Our volunteers can engage in meaningful activities, including emailing or calling lawmakers, meeting with members of Congress, attending training, writing blog posts, and much more.”
“Ambassadors serve as spokespeople, helping to communicate the MDA mission,” says Alicia Dobosz, MDA’s Vice President of Community Engagement.
Both kids and adults serve as MDA Ambassadors, which involves raising awareness about neuromuscular diseases by sharing their compelling stories at events, online, and through Quest Media and other media outlets. Ambassadors help others understand the impact of neuromuscular diseases while gaining valuable public speaking experience and building connections in the MDA community.
MDA supports a national network of Care Centers that offer specialized, multidisciplinary care for neuromuscular diseases and are at the forefront of research on these diseases. MDA Care Center Network healthcare providers are skilled in the diagnosis and medical management of neuromuscular diseases and keep up-to-date on the latest studies and clinical trials.
The MDA Care Center Network is located in more than 150 of the top health institutions throughout the United States.
MDA designs educational programs and materials that empower the neuromuscular disease community with knowledge and resources. They range from disease-specific in-person seminars to online workshops and webinars covering daily living, social-emotional well-being, and caregiving to printable fact sheets and guides.
“Our Community Education team’s goal is to help individuals and families in the community overcome barriers to access, navigate life’s transitions, and make informed decisions about care,” Alicia says.
This service offers 30-minute one-on-one video chats with MDA Specialists to introduce individuals with neuromuscular diseases, as well as their families and caregivers, to the broad network of support opportunities MDA offers. These sessions are great for those who are new to MDA, as well as people looking for more resources and support as their disease progresses.
Several gene therapies have been approved to treat neuromuscular diseases, and many more are being studied. As more gene therapies become available, MDA recognizes the importance of educating our community about the advances and opportunities in the world of gene therapy.
The MDA Gene Therapy Support Network connects people with educational resources and offers video calls with MDA Gene Therapy Support Specialists, who can answer questions about the latest gene therapy news.
This online community brings 2,500 MDA community members of all ages together in a fun, supportive environment. You can join MDA Let’s Play on Twitch and Discord to play and watch livestreams from other gamers. Organized events include game nights, movie nights, and trivia.
Kids and young adults with neuromuscular diseases can attend MDA’s week-long overnight camps around the United States — at no cost to their families. Every year, hundreds of volunteers provide support as camp counselors and medical staff to ensure the campers have an unforgettable summer making friends and trying new things.
MDA Summer Camp offers a fun and safe outdoor experience with activities such as horseback riding, swimming, adaptive sports, arts and crafts, camp dances, and more. They also give parents respite while trained volunteers provide campers with physical and emotional support.
“Summer Camp is a place of complete inclusion, empowerment, exploration, and growth,” Alicia says. For many campers, it’s a life-changing experience.
One former camper says: “Camp really gave me a safe place to learn and explore myself. In return, I became more confident in who I am as an adult.”
Jason Henninger is a writer for Quest Media.
All About Volunteering
MDA builds community among people affected by neuromuscular diseases and those who support them through a variety of programs and events, such as Muscle Walks, golf tournaments, and galas, not to mention MDA Summer Camp, called “the best week of the year.” None of this would be possible without the thousands of generous volunteers who give their time to MDA.
“There are so many ways for folks to get involved with MDA,” says Wendi Dressen, MDA’s Senior Director of Volunteer Programs. “This can include volunteering for a remote or in-person event, supporting a fundraiser, participating in a Muscle Walk, running with Team Momentum, writing a letter to your congressperson, or posting MDA information on your social media.”
Every act of service and every hour of volunteered time helps MDA serve individuals and families living with neuromuscular disease and change lives.
Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.