As Spinal Muscular Atrophy (SMA) Awareness Month Begins, Cure SMA Spotlights Progress and Persistent Gaps in SMA Care

SCHAUMBURG, Ill., Aug. 7, 2026 /PRNewswire/ -- As August marks SMA Awareness Month, Cure SMA is drawing attention to its 2025 State of SMA report, an annual data resource that tracks the changing landscape of spinal muscular atrophy (SMA) for the more than 9,000 individuals and families living with the disease in the United States.

Now in its fifth year, the report draws on data from more than 11,000 individuals with SMA and their families Cure SMA has connected with since 1996. Cure SMA estimates it has connected with nearly 70% of the current U.S. SMA community.

The report has been used to inform the FDA on unmet needs, support new treatment approvals, and educate insurers on access barriers facing the SMA community.

Signs of meaningful progress

The report points to real gains for individuals and families navigating SMA:

• The mortality rate for SMA has dropped nearly 60% over the past 10 years.
• The median age at SMA diagnosis has fallen to just 7 days, down from 1.2 years in 2017, largely driven by the expansion of newborn screening, which reached all 50 states in 2024.
• The average time between diagnosis and first treatment has dropped to 28 days, down from 196 days in 2017.
• Approximately 77% of individuals with SMA in the U.S. were using an FDA-approved treatment as of the fourth quarter of 2025.
• Representation of teens and adults living with SMA has grown steadily over the past decade, reflecting more individuals with SMA living into adulthood.

Unmet needs still shape daily life

Alongside this progress, the report identifies ongoing barriers that individuals and families impacted by SMA continue to navigate:

• Approximately half of children and adults with SMA have experienced an insurance denial for a prescribed SMA treatment, and 49% of medical equipment users have faced a denial for equipment such as wheelchairs.
• 78% of adults living with SMA report that the disease has impacted their mental or emotional health, citing stress related to relying on others, worry about disease progression, and feeling like a burden to others as the most common impacts.
• 56% of single adults with SMA report worrying about the impact marriage could have on their public benefits.
• More than half of adults on current treatment report ongoing worry that their treatment may stop working.

"This report reminds us how far the SMA community has come, and how far we still have to go. Behind every statistic is a person and a family working to invest in a fuller life with SMA, and their voices are what continue to guide our work," said Kenneth Hobby, President of Cure SMA.

"One of the most encouraging signals in this year's data is how much earlier we're catching SMA and starting treatment, but the numbers also show us where the science still needs to catch up with the community's daily reality. Things like fatigue, mental health, and long-term function are harder to measure than survival, but they matter just as much to the people living with this disease, and that's where we're focused next," said Lisa Belter, Lisa Belter, Vice President, Data Analytics, Cure SMA.

The full 2025 State of SMA report is available at curesma.org/2025-state-of-sma-report/

Throughout SMA Awareness Month, Cure SMA is hosting its annual Spirit Week (August 8–15), with events for the community to get involved. Details are available at curesma.org/sma-awareness-month/.

About Spinal Muscular Atrophy (SMA)

Spinal muscular atrophy (SMA) is a progressive neurodegenerative disease affecting motor nerve cells in the spinal cord and the muscles used for breathing, eating, crawling, and walking. SMA affects approximately one in 15,000 births in the U.S., and about one in every 50 Americans is a genetic carrier.

About Cure SMA

Cure SMA is the leading nonprofit organization driving research, advocacy, and support for individuals and families living with SMA. Its mission is to advance research for treatments and a cure, and to support and empower everyone impacted by SMA today.

SOURCE Cure SMA