August is Spinal Muscular Atrophy Awareness Month

Spinal Muscular Atrophy Awareness Month aims to raise awareness and advance research for a condition that affects one in 6,000 people.

August 3, 2026
August, Events

Unless you have spinal muscular atrophy (SMA) yourself or know someone who does, you might not be familiar with this condition. However, thousands of people are affected by SMA, along with their families, caregivers, and communities.

SMA is a genetic disorder that affects nerve cells in the brain and spinal cord. As a result, it can impact the muscles used for crawling, walking, speaking, and swallowing. Symptoms can appear within the first six months of life, or take years to develop. Between 10,000 to 25,000 children and adults in the United States are living with SMA.

SMA Awareness Month is observed each year in August to educate the public, healthcare professionals, and policymakers about SMA and encourage continued research, advocacy, and access to care. In this article, we’ll share the history of SMA Awareness Month and some ways you can help raise awareness about this condition.

History of Spinal Muscular Atrophy (SMA) Awareness Month

Since its inception in 1996, SMA Awareness Month has played a crucial role in amplifying the voices of people with SMA and their families, and build support for research and improved care.

In 1999, scientists identified the gene that causes SMA, opening the door to future treatments. The first SMA drug development program began a year later, and by 2001, researchers were studying a potential therapy in mice. In 2016, the first FDA-approved treatment for SMA, Spinraza, offered new hope and improved outcomes for many people living with the condition.

However, the impact of SMA Awareness Month goes beyond research. Thanks to years of advocacy from the SMA community and supporters, SMA was added to the federal Recommended Uniform Screening Panel for newborns in 2018. Today, around 97% of all babies born in the U.S. are screened for SMA.

5 Ways to Recognize Spinal Muscular Atrophy (SMA) Awareness Month

Here are five ways to raise awareness about SMA all month long:

1. Know the symptoms

Routine newborn screening means that babies affected with SMA can benefit from treatment, therapy, and support as soon as possible. Still, it can take a long time for adults who weren’t screened at birth to get an accurate diagnosis because SMA is not well-known. Adult SMA (Type 4) is particularly hard to diagnose since the symptoms can be subtle, mimic other conditions, and include:

Muscle weakness, especially in the legs or hips
Waddling or difficulty walking

Twitching or shaking
Finger trembling
Fatigue or trouble breathing

If SMA is suspected, it can be diagnosed with a simple blood test.

2. Help build assistive technology

People with SMA and other disabilities often use assistive technology devices to communicate, control their environment, and complete everyday tasks. However, these devices can be expensive to buy off-the-shelf.

One way to help is to build and donate “DIY” assistive technology devices through an organization like Makers Making Change. The best part is you don’t have to be an engineer to do it. Anyone with access to a 3D printer or basic tools can build assistive devices using plans that are available for free on the internet.

3. Make your office more accessible

Accessible office spaces help promote inclusion and make your company a welcoming place for everyone to work. Fortunately, designing your office for inclusion doesn’t require costly architectural upgrades.

In fact, there are plenty of free or low-cost ways to make your office more accessible. For example, this could be as simple as rearranging office furniture to allow for wider walkways for wheelchair users. Or, it might mean painting walls, floors, stairs and countertops in contrasting colors to define these different surfaces and reduce trip-and-fall hazards.

4. Shop and support individuals with SMA

By supporting disability-owned businesses, you can help create more opportunities for meaningful work, savings, and economic freedom. Here are some small businesses created by individuals living with SMA:

Frienden Arts: Art prints, canvases, and original designs
AbleMove: Lifestyle products for wheelchair users

5. Send a message to your representatives

By now, you know that August is SMA Awareness Month. But did you know that it’s also usually a Congressional recess? Congressional recess, also known as a “district work period,” is a time when members of Congress go home from Washington, D.C., to work in their own states or Congressional districts. This makes it the perfect time to connect with your representatives through a letter, email, or in-person meeting. If you’re not sure where to start, sign up through Cure SMA’s advocate signup center for action alerts and prewritten messages you can share.

Download the free Disability Events calendar

Whether you help build an assistive device or send an email to your representatives, every action counts during Spinal Muscular Atrophy (SMA) Awareness Month. For more disability-related events and observances you can participate in all year, download our free Disability Events Calendar.