Understanding SMA

Spinal Muscular Atrophy Awareness Month: Understanding SMA and the Role of Movement

August is Spinal Muscular Atrophy (SMA) Awareness Month, a time to shine a light on a rare but serious genetic condition, support the families affected by it, and highlight the role that movement-based therapies can play as part of a comprehensive care plan.

What SMA Is

Spinal Muscular Atrophy is a progressive neurodegenerative disease that affects motor nerve cells in the spinal cord, impacting essential muscle functions such as breathing, eating, crawling, and walking. It's caused by the "wasting away" of motor neurons, the nerve cells in the spinal cord responsible for controlling voluntary muscle movement.

A few key facts:

• SMA is the leading genetic cause of death in babies under the age of two, though the disease spans a wide spectrum of severity, including forms that appear later in childhood or adulthood.

• It affects families of all ethnic backgrounds, often with no prior family history of the disease. Roughly 1 in 6,000 to 10,000 people develop SMA, and about 1 in 50 people are unknowing genetic carriers.

• Common complications can include poor head control, swallowing difficulties, scoliosis, and joint contractures, depending on the type and severity.

• Recent years have brought real progress: advancements in research have led to multiple FDA-approved therapies for SMA, offering meaningfully improved outlooks for many families compared to a decade ago.

Why Movement and Physical Movement Matter

The encouraging news is that with proper treatment and physical movement like Pilates, many children and adults with SMA can live full, productive lives. Physical and occupational therapy programs help people with SMA maximize the muscle function they have and accomplish daily activities, and home-based strengthening and stretching exercises, along with assistive devices like braces or orthotics, are a core part of ongoing symptom management. The central goal of any movement-based approach for SMA is preventing further muscle loss and maintaining the health of the muscle that remains, not reversing the underlying genetic condition, but protecting function and comfort within whatever a person's current ability allows.

Where a Method Like Pilates Can Fit In

This is a place where I want to be precise, because it matters: Pilates is not a treatment for SMA, and it doesn't address the disease's underlying genetic or neurological cause. But, what controlled, adaptable movement work, the kind Pilates equipment and an instructor educated in anatomy and physiology is specifically designed to provide, can offer, always as one piece of a larger care team's plan, is:

• Precisely adjustable resistance and support. Equipment like the reformer allows resistance to be dialed up or down in very small increments, which matters enormously for someone working with limited or fluctuating muscle strength.

• Controlled, supported range of motion. For individuals managing joint contractures or reduced mobility, controlled movement patterns, done under the guidance of a physical therapist familiar with the person's specific condition, may help support existing range of motion and comfort.

• A framework for building whatever functional strength is available, in a format that can scale from very gentle, supported movement up to more independent work, depending on where someone is in their condition.

Any exercise approach for someone with SMA has to be built and supervised directly by their medical and physical therapy team, this isn't a place for general fitness instruction to substitute for that relationship. But for PTs and movement professionals like STOTT instructors, working within that care team, the same core principles that make Pilates equipment useful for rehabilitation broadly (graduated, precisely controlled resistance; support for compromised movement patterns) are part of why it shows up as a tool in some SMA-focused physical therapy practices.

How to Support SMA Awareness Month

The purpose of SMA Awareness Month is to demonstrate support through local and national activities, promote awareness, educate people, raise funds for research, and aid in the search for a cure. Organizations like Cure SMA and SMA UK lead campaigns throughout August to educate the public, support affected families, and highlight the importance of early diagnosis and access to care. Many communities also hold a candle-lighting ceremony each year, at sunset on the second Saturday of August, in memory of those who have passed away from SMA and in honor of the SMA community.

The Takeaway

SMA is rare, serious, and life-altering for the families it touches, but it's also a condition where treatment, physical therapy, and thoughtfully adapted movement work have made real, meaningful differences in quality of life. This August, whether that means learning more, supporting research, or simply better understanding what SMA families navigate, awareness is the first step toward better care and continued progress.

If you or someone you know is managing SMA and considering incorporating Pilates into their care plan, consult with your medical and physical therapy team to explore this option.

By working together with knowledgeable professionals, you can discover how Pilates might complement your existing treatment plan and support your journey toward improved strength and mobility.

For more information or to speak with a qualified Pilates instructor, call or text Cami Grasher at (214) 558-0996 or click below to see the schedule and book a class.

Check the Schedule

This article is for general informational purposes and isn't a substitute for medical advice. Any exercise or movement program for someone with SMA should be designed and supervised by their physician and physical therapy team.

Sources: National Today; National Day Calendar; TREAT-NMD; Michigan.gov (Governor's Proclamation); Unicity Healthcare; Georgia Pain Care; Lowcountry Therapy.