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Cure SMA Update on SMA Treatment Delays

September 24, 2025
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Dear SMA Community, Yesterday was a disappointing and frustrating day for our community. We learned of two FDA approval delays for Scholar Rock’s apitegromab and […]

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Biogen Receives News on Supplemental New Drug Application (sNDA) for High Dose Nusinersen from the U.S. FDA

September 23, 2025
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Today, Biogen announced that the U.S. Food and Drug Administration (FDA) has delayed the approval with a Complete Response Letter (CRL) for the supplemental New Drug […]

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Scholar Rock Receives News on Biologics License Application (BLA) for Apitegromab from the U.S. FDA

September 23, 2025
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Today, Scholar Rock announced that the U.S. Food and Drug Administration (FDA) has delayed the approval with a Complete Response Letter (CRL) for the apitegromab […]

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Cure SMA 2025 Hill Day: 24 Hours of Advocacy Impact

September 18, 2025
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On Tuesday, September 16, about 150 adults with spinal muscular atrophy (SMA) and family members of children with SMA visited Capitol Hill to advocate for […]

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SMA Researchers and Clinicians from Around the World Gather at the 29th Annual SMA Research & Clinical Care Meeting (2 of 2)

September 3, 2025
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At the end of June, SMA researchers and clinicians from around the world gathered in Anaheim, California, for the 29th Annual SMA Research & Clinical […]

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SMA Researchers and Clinicians from Around the World Gather at the 29th Annual SMA Research & Clinical Care Meeting (1 of 2)

August 21, 2025
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At the end of June, SMA researchers and clinicians from around the world gathered in Anaheim, California, for the 29th Annual SMA Research & Clinical […]

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Cure SMA Shares Patient Voice and Needs with FDA

August 20, 2025
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  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 […]

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

August 18, 2025
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  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 […]

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Key Congressional Committee Recommends New Federal Research in SMA

August 4, 2025
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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 […]

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

August 1, 2025
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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 […]

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