Talking to other people living with spinal muscular atrophy (SMA) is a great way to find support. Support groups can provide advice, information, and a sense of community. Joining a support group can improve your mental and emotional health.
Many organizations fund research and advocacy for SMA. These organizations provide services to families, including support groups.
What organizations provide support groups for families?
Muscular Dystrophy Association (MDA)
The MDA sponsors SMA research and offers support groups specifically for SMA. Some support groups are for parents of children with SMA.1
The MDA also provides a range of other services to families affected by SMA. This includes educational resources, caregiver support, and equipment assistance. They host summer camps and young adult programs for children and adults living with SMA.1
To find support groups or request other services from MDA, fill out their online form. You can choose what services you would like information about. You can also enter your zip code to find local MDA communities. MDA online support groups are active on their social media accounts on Facebook and Twitter.1
Cure SMA
Cure SMA is a nonprofit organization that advocates for people with SMA and provides support services. It holds an annual conference that brings together researchers, doctors, people with SMA, and families. The conference includes educational workshops, programs for children, and social activities.2
Cure SMA currently has 36 chapters around the United States. These chapters provide support to people with SMA and their families. Cure SMA also organizes fundraising, education, and advocacy events. Visit the chapter page to find a group near you. Cure SMA has online groups on its social media accounts.2
Cure SMA also provides online educational materials for people with SMA, caregivers, and doctors. This includes a list of treatment centers for people with SMA and answers to questions about SMA and its treatments.2
Gwendolyn Strong Foundation (GSF)
The GSF is a nonprofit that raises awareness and funds research for SMA. It also provides financial support to families of children with SMA.3
GSF has online communities on its social media accounts. It also maintains a blog on its website. Readers can learn about recent SMA research and read personal accounts of others living with SMA.3
SMA Angels Charity
SMA Angels Charity raises funds for research and healthcare improvements for people with SMA. Its main fundraiser is an annual gala. Visit the charity’s website or social media accounts for support groups and other information.4
Other online resources
Other organizations provide resources for people with SMA and their families. These organizations may not have active support groups. However, they contain educational materials and resources. These include:
- SMA Foundation
- SMA My Way
- Together In SMA
Some people living with SMA also have active social media platforms on Facebook, Twitter, and Instagram. These bloggers and influencers provide personal and informative material about life with SMA. Many of them also raise money for research or healthcare improvements. Their online communities may be useful for people with SMA to connect with others.