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Impacting approximately 4 in every 100,000 people in the US, Spinal Muscular Atrophy (SMA) is a rare, genetic disease affecting the neuromuscular systems, causing muscles to become weak and eventually stop working. This includes not only physical movements, but also impacts the ability to swallow and eventually even to breathe. The cause of this is related to the nerve cells in the spinal cord that enable a person to control their muscle movement. 

Spinal Muscular Atrophy Awareness Month is here to increase knowledge about this disease, as well as to promote the support of the individuals and families who are impacted by it.

History of Spinal Muscular Atrophy Awareness Month

Spinal Atrophy Awareness Month was founded by the Cure SMA organization, specifically as the idea of a member of the organization’s community, Shaakira Thomas. Since it was first started in 1996, this event and its organizers have been working to improve public knowledge and awareness about SMA, while pushing advancements in research for understanding and treatment of this disease.

Each year, the Cure SMA organization sponsors Spinal Muscular Atrophy Awareness Month and offers an array of opportunities for individuals, families, schools, medical professionals and community groups to get involved.

How to Observe Spinal Muscular Atrophy Awareness Month

People who have SMA, along with their friends, family members and community can get involved with SMA Awareness Month to grow awareness and also improve support in a variety of ways. Start with some of these ideas for the event:

Share Info About SMA 

Cure SMA offers information and graphics that help people share facts about this disease with their family members, coworkers and larger community. The more people know, the more they can provide support! Check out and perhaps share some of these facts from Cure SMA to get started:

  • Approximately 1 in 50 people in the US are carriers for the SMA gene

  • While SMA impacts motor skills, it does not affect a person’s intelligence or cognitive abilities

  • There are four main types of SMA the develop at different life stages: Birth (1), Childhood (2,3) and Adult (4), with Type one being the most severe

  • There is currently no cure for SMA, but some promising treatments are in the development stages, and some current therapies may help slow disease progression

Host an SMA Awareness Event

From a small dinner party to help educate friends and family members to a large community event, Spinal Muscular Atrophy Awareness Month is an excellent time to bring people together around this particular cause! Organize a run/walk/roll event where participants can raise funds toward research and a cure or host a virtual event to create conversation and build support for the people impacted by SMA.

Those who are arranging events, or who simply want to share on social media, might want to take advantage of the different resources and tools provided on the Cure SMA organization website.  

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