Spinal Muscular Atrophy Awareness Month
August marks Spinal Muscular Atrophy Awareness Month. Each year, families and organizations recognize loved ones and individuals with Spinal Muscular Atrophy (SMA), a rare neurological condition that affects and gradually weakens the body’s muscles, leading to atrophy and sometimes paralysis.
The congenital anomaly occurs when the spinal cord does not form normally at birth, and symptoms of SMA may not present itself until later on in the person’s life. The affliction of SMA is different for each individual and occurs at different stages of their lives depending on which of the 5 types of SMA they have.
Some common symptoms of SMA include decreased fetal movements, muscle weakness, difficulty swallowing, and respiratory issues. Unfortunately, there is no cure for this hereditary condition, but medical researchers are hopeful that one will be discovered soon.
Though SMA has one of the highest rates of infant mortality, there are people with SMA who do lead productive and successful lives as adults.
Notable Individuals with SMA
Actress, songwriter, and public speaker, Alexa Dectis, has been an ambassador for the Muscular Dystrophy Association since she was five years old. She appeared on Sesame Street as a child and is currently an attorney who helps to protect Hollywood child actors. Dectis was also recognized on Forbes’ 30 Under 30 — Hollywood & Entertainment list in 2022.
S. C. Megale is an American author and screenwriter who writes young adult fiction, science fiction, and fantasy. She has been nominated for an Eric Hoffer award and received the 2020 Reader Views Reviewers Choice Award and an Independent Publisher Book Award. Megale’s books include This is Not a Love Scene, Overboard, and Hockey’s Hidden Gods.
And Nicolas D’Agostino is a motivational speaker, author, radio host, and entrepreneur. He has a twin brother, who also has SMA, and he wanted to be a source of inspiration to others who have SMA. D’Agostino often incorporates spoken word poetry in his speeches and has been featured on the Jerry Lewis MDA Telethon.
How You Can Support SMA Awareness Month
The second Saturday of August is designated for SMA Candle Lighting as a way to honor persons with SMA.
Share your colors. Cream and Ivory color ribbons are worn to represent the innocence and purity of children. Included on the ribbon is a pink and mauve rose image, which represents strength and courage.
You can also contribute to an SMA non-profit or charity, such as Cure SMA, which is one of the leading organizations that supports SMA research and advocacy. They began as a volunteer organization in 1984 under the name Families of Spinal Muscular Atrophy (FSMA). They are internationally known for their endeavors in research, fundraising, and support.
We at Ability Central also encourage raising awareness by updating your social media profile on Facebook or LinkedIn with an SMA social media banner. You can use #SMAawaremessmonth when you share your experiences and connections to the SMA community.
Additional SMA Organizations and Resources
Below are some other organizations where you can find out more about SMA for information and support:
Another way to show your support is by donating to Ability Central. At Ability Central, we’re dedicated to amplifying the voices of people with disabilities and supporting the organizations that serve them — your donation helps us continue this mission.
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
