Spinal muscular atrophy (SMA) affects every aspect of day-to-day life. So it’s important to be able to discuss problems and seek advice.
Joining an SMA support group can have a positive impact on your emotional well-being. It’s something to consider for parents, family members, or people living with SMA.
Here are some of the best online resources for SMA support:
The Muscular Dystrophy Association
The Muscular Dystrophy Association (MDA) is a leading sponsor of SMA research. The MDA also offers support groups, some specifically for SMA. Others are for muscular disorders in general. They discuss managing grief, transitions, or treatments. MDA also has support groups for parents of children with muscular disorders.
To find a support group, contact your local MDA staff. Head to the MDA support group page, and enter your ZIP code in the “Find MDA in Your Community” locator tool on the left-hand side of the page.
Search results will include a phone number and address for your local MDA office. You can also find a local care center and upcoming events in your area.
Cure SMA is a nonprofit advocacy organization. They hold the largest SMA conference in the world each year. The conference brings together researchers, healthcare professionals, people with the condition, and their families.
Their website contains a lot of information about SMA and access to support services. They even provide recently diagnosed individuals with care packages and information packets.
There are currently 34 volunteer-led Cure SMA chapters across the United States. Contact information is found on the Cure SMA chapters page.
Each chapter organizes events every year. Local events are a great way to meet others affected by SMA.
Contact your local chapter or visit the Cure SMA event page to search for events in your state.
You can also connect with others via Cure SMA’s Facebook page.
Gwendolyn Strong Foundation
The Gwendolyn Strong Foundation (GSF) is a nonprofit organization raising global awareness for SMA. You can connect with others for support via their Facebook page or Instagram. You can also join their mailing list for updates.
One of their initiatives is the Project Mariposa program. Through the program, they’ve been able to grant 100 iPads to people with SMA. The iPads assist these people with communication, education, and fostering independence.
Subscribe to the GSF’s YouTube channel for updates on the project and to watch videos of people with SMA telling their story.
The GSF website also has a blog to help people living with SMA and their families stay up to date on SMA research. Readers can also learn about the struggles and successes of those living with SMA.
SMA Angels Charity
SMA Angels Charity is aimed at raising money for research and improving the quality of care for people with SMA. The organization is run by volunteers. Each year, they hold a ball to raise money for SMA research.
Organizations outside the United States
Visit their website or call for more information about support groups.