About Spinal Muscular Atrophy
Spinal muscular atrophy (SMA) is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Individuals with SMA don’t produce survival motor neuron (SMN) protein at high enough levels. Without this protein, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.
About Cure SMA
What Causes SMA?
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1) leading to debilitating muscle weakness. Individuals with SMA don't produce SMN protein at high enough levels.
Who Does SMA Affect?
Each year, thousands of infants in the U.S. and around the world are born with SMA. SMA also impacts children, teens, and adults from every background, race, and gender.
How Does SMA Affect Individuals?
Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing. However, SMA does not affect a person’s ability to think, learn, and build relationships with others.
Your Fundraising Dollars at Work
Every dollar raised with Cure SMA's events helps grow research, care, advocacy, and support programs that the SMA community depends on. We will ensure everyone with SMA –from infants to adults– have the chance to live a full and productive life.
Thousands of individuals with SMA and their families receive support and access Cure SMA resources each year. With the passionate support from people like you, we can meet the ever-changing needs of all people with SMA.
Empower the Community
Events across the country bring together people from coast-to-coast to raise awareness and build community. Whether you have a direct connection to SMA or not, everyone is invited to make a difference by fundraising for Cure SMA!
Doug McCullough's Story
Before connecting with Cure SMA years ago, Doug McCullough had never met anyone else who had SMA. Doug has SMA Type 3 and works hard to promote inclusion of people with disabilities. He is an avid sports fan and participates in adaptive sports, such as cycling, kayaking, snow and water skiing, surfing, canoeing, and camping.
Those in the SMA community often feel a roller coaster of emotions as they face diagnosis, treatment, and daily life. “Despite the historical stigma of disabilities, I never thought of myself as disabled growing up and worked to hide my ‘shortcomings’ as much as possible. I learned SMA doesn’t define me, but it is part of who I am,” said Doug.
Lighting Up the Night:
Shaakira Thomas and Family
Shaakira and her husband, Parris Sr., are parents to Aaliyah, Kassian, and four-year-old Parris Jr., who was diagnosed with SMA. Shaakira and Parris Sr. first noticed something amiss when Parris Jr. started walking. “He had a little wobble, and it took until just before his third birthday for us to get a diagnosis of SMA,” shared Shaakira.
Despite her son’s challenges, Shaakira believes that SMA has made her family stronger. Shaakira helps support the SMA community by researching buildings that ‘light up’ for days of recognition and ensuring major landmarks across the US go purple to raise SMA awareness.
Getting in the Game:
Brady Chan and Family
Ten-year-old Brady Chan from North Carolina has big goals that stem from his passion for video games. He is part of an e-gaming team, where his favorite games include “Brawl Starts” and “Overwatch.” In the future, Brady hopes to become an engineer and create his own video games.
Brady was diagnosed with SMA at 18 months old. Mimi, Brady’s mom says “Brady is a confident, young man with a magnetic personality. He loves reading, learning, gaming, and writing poetry. Brady loves conversation and has never had problems making friends. He does, however, see very clearly that SMA keeps him from doing things his friends can do. Sometimes, that’s okay. He doesn’t have to play on the mulched playground, and instead created a soccer crew.”