Spinal Muscular Atrophy Awareness Month: Progress, Promise, and Protecting What Matters

Shared Horizons, Inc.
Aug 4
2 min read

August is Spinal Muscular Atrophy (SMA) Awareness Month, a time to raise awareness, honor the SMA community, and recognize how far treatment has come — while acknowledging the challenges families still face.

What Is SMA?

Spinal muscular atrophy is a genetic neuromuscular condition that affects the nerve cells controlling voluntary muscle movement. It ranges widely in severity, from infants who need round-the-clock support to adults managing milder forms well into their later years. SMA affects an estimated 1 in 10,000 babies born in the U.S.

A Decade of Progress — and a New Set of Costs

Therapies like Spinraza, Evrysdi, and Zolgensma have transformed outcomes for many people with SMA, extending life expectancy and preserving muscle function in ways that weren't possible a decade ago. But these advances come with steep costs, and the day-to-day expenses of living with SMA — mobility equipment, home modifications, personal care assistance, physical therapy — remain constant.

The Role of Public Benefits — and Their Limits

Many individuals and families managing SMA rely on Medicaid and SSI to help cover treatment, equipment, and in-home care. But these programs come with strict limits on savings and assets, which can make it difficult to accept help from family or plan for the future without risking the benefits that make daily life possible.

How Shared Horizons Can Help

A pooled Special Needs Trust allows families to set aside funds — from a gift, an inheritance, or a legal settlement — that can be used to pay for the extras public benefits don't cover, without disqualifying a loved one from Medicaid or SSI. It's one way to make sure that progress in treatment is matched by security in daily life.

To learn more about how a Special Needs Trust can support someone in your life managing SMA, contact Shared Horizons at (202) 448-1460 or info@shared-horizons.org.