MDA Community Groups

You don’t have to navigate your neuromuscular disease journey alone. As a member of the MDA Community, one of the many ways you can connect with others and share your personal story is by joining an MDA Community Group. Community Groups are supportive groups that provide a safe place to gather resources, interact meaningfully with others and exchange valuable information with others in the neuromuscular disease community.

MDA offers three different Community Groups for you to choose from including:

• Newly Diagnosed Groups
  
  • Pediatric Group for those under the age of 18 and diagnosed within the last year
    • Dates and times coming soon
  • Adult Group for those over the age of 18 and diagnosed within the last year
    • Dates and times coming soon
• ALS group for those living with ALS and their family members
  • Third Thursday of every month, 5pm CT
• Gene Therapy Community Groups:
  • Parent/Guardians of children 0-17 with DMD/SMA who have received gene therapy or who are eligible for gene therapy.
    Every other Tuesday - April 2 - June 11, 2024
  • Parents/Guardians of children 0-17 with DMD who are not eligible for gene therapy.
    Every other Thursday - April 4 - June 13, 2024
  • Parents/Guardians of children 0-17 with SMA who are not eligible for gene therapy.
    Every other Thursday - April 11 - June 20, 2024

MDA membership is required to attend a Community Group, and Community Groups will only be offered in English at this time.

Contact Us

MDA Resource staff are available Monday through Friday 9 am to 5 pm CT:

By Phone: 1-833-ASK-MDA1 (1-833-275-6321)
By Email: ResourceCenter@mdausa.org