Author name: Sarah McCall

New Report Highlights Caregiving Challenges of Individuals with Spinal Muscular Atrophy

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Cure SMA released a national report on National Caregivers Day that chronicles the caregiving challenges experienced by individuals with spinal muscular atrophy (SMA) and recommends state and federal actions to help address their caregiver needs. Stuck Inside: A National Report on Caregiving for Individuals with SMA features numerous first-person experiences and quotes highlighting the essential […]

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Cure SMA is Thrilled to Announce the Establishment of our New Chapter in Puerto Rico!

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Led by Keishla Rolon, Ramon Rivera Vega, Elizabeth Serrano, Natasha Santiago, and Brenda Luciano, Cure SMA’s Puerto Rico chapter has already been hard at work helping individuals and families throughout the island. In late January, the Puerto Rico community came together to celebrate their new chapter through Summit of Strength and Walk-n-Roll events, with over

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A Community’s Unwavering Love: How the Stickane Family Started a Foundation to Cure Spinal Muscular Atrophy

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In a world where adversity often brings out the best in people, the Stickane family of Southlake, TX stands as a shining example of unwavering love and resilience.   Their journey began when their middle son, Luke, was diagnosed with SMA in 2017. Luke’s diagnosis with SMA was a turning point for the Stickane family

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Nevada Starts Screening for SMA – Only One State Remains!

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Nevada has become the 49th state to begin screening for spinal muscular atrophy (SMA). Nevada State Public Health Laboratory officials confirmed with Cure SMA that beginning December 21, 2023, all Nevada newborns will be screened for SMA, a neuromuscular disease. “We are grateful for the work of the Nevada Department of Health and Human Services

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Analysis: Cure SMA’s Risk/Benefit Survey

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One of Cure SMA’s top priorities is to relay the SMA community’s treatment experiences and preferences to the United States Food and Drug Administration (FDA). This helps the FDA make patient-centered decisions about new SMA drugs. 2022 Cure SMA Risk/Benefit Survey Results    In the 2022 Cure SMA Risk/Benefit Survey, we asked people with SMA

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