August 2025

SMA Researchers and Clinicians from Around the World Gather at the 29th Annual SMA Research & Clinical Care Meeting

At the end of June, SMA researchers and clinicians from around the world gathered in Anaheim, California, for the 29th Annual SMA Research & Clinical Care Meeting. Their common goals were to accelerate the pace of research into SMA treatments and to achieve excellence in SMA clinical care. The annual meeting provides an opportunity for […]

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Cure SMA Shares Patient Voice and Needs with FDA

  One of Cure SMA’s top priorities is to relay the SMA community’s experiences, preferences, and unmet needs to the United States Food and Drug Administration (FDA). This enables the FDA to make patient-centered decisions about new SMA drugs. This is a critical time for patient input on SMA treatment, as new therapies and variations

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Cure SMA Educates Insurers on Unmet Needs and Access Barriers of the SMA Community

  Cure SMA completed a year-long advocacy effort to educate public and private insurers about the current state of spinal muscular atrophy (SMA), including the unmet needs of individuals with SMA and barriers they face in accessing essential healthcare and treatments. Patient and clinical-reported data have chronicled how SMA is rapidly changing due to the

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Key Congressional Committee Recommends New Federal Research in SMA

A key congressional committee approved fiscal year 2026 legislation that now prioritizes new federal research funding for spinal muscular atrophy (SMA). The U.S. Senate Appropriations Committee recognized the unmet medical needs of individuals with SMA, including those from military and veteran families, by this year adding “spinal muscular atrophy” within a biomedical research program managed

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This August is Spinal Muscular Atrophy (SMA) Awareness Month! 

Whether you live with SMA, know someone who does, work in research or care, or are beginning your journey with the community—SMA Awareness Month is a time to come together to celebrate progress, honor experiences, reflect on challenges, and build momentum for the future. The theme of SMA awareness month, “Breakthroughs Begin with You,” puts

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