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 four different Community Groups for you to choose from including:
Adult Community Support Group
Adult Group for adults ages 18+
- Third Wednesday of the month, 5pm CT
- 7/17/2024
- 8/21/2024
- 9/18/2024
- 10/16/2024
- 11/20/2024
- 12/18/2024
Join an Adult Support Group
Pediatric Community Support Group
Pediatric Group for parents/guardians with a child under the age of 18 (children are welcome)
- Third Wednesday of the month, 4pm CT
- 7/17/2024
- 8/21/2024
- 9/18/2024
- 10/16/2024
- 11/20/2024
- No December Meeting
Join a Pediatric Support Group
ALS Community Support Group
ALS Group for those living with ALS and their family members
- Third Thursday of the month, 5pm CT
- 7/18/2024
- 8/22/2024
- 9/19/2024
- 10/17/2024
- 11/21/2024
- 12/19/2024
Join an ALS Support Group
Gene Therapy Community Support Group
Gene Therapy Community Groups will operate in an open group conversational format that welcomes new eligible participants to join any of the six listed virtual community meetings. If you are unable to attend one of the scheduled community meetings, please feel free to join the next one. See below for the general topics for each monthly session (topics may be subject to change) and click to complete the interest form to get the link.
Currently, Gene Therapy Community Groups are open to parents/guardians of individuals with DMD (age 0-17) and SMA (age 0-2).
- Parents/Guardians of children with DMD (age 0 – 17) or SMA (age 0-2) who HAVE received Gene Therapy or completed antibody testing
Meeting Dates: 1st Tuesday of the month
Meeting Time: 12pm – 1pm CT
- Parents/Guardians of children with DMD (age 0-17) or SMA (age 0-2) who have NOT received Gene Therapy or completed antibody testing
Meeting Dates: 1st Thursday of the month (January will be the 2nd Thursday (1/9) due to the New Year
Meeting Time: 12pm – 1pm CT
Topics for both groups will be the same, although we expect the discussion to be different based on group experience.
September – Gene therapy and what to expect
October – Impact of gene therapy and neuromuscular disease diagnosis
November – Creating a network of support and community
December – Self-care for caregivers
January – Advocacy and awareness
February – Life after gene therapy
MDA membership is required to attend a Community Group, and Community Groups will only be offered in English at this time.
Join a Gene Therapy Community Group
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
