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Cure SMA Applauds Federal Agency Decision that Should Lead to Better Insurance Coverage for Seat Elevation Systems in Power Wheelchairs

May 25, 2023
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Thanks to the advocacy of individuals with spinal muscular atrophy (SMA) and others, the Centers for Medicare and Medicaid Services (CMS) now considers seat elevation […]

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Biogen Announces New Updates Across its SMA Research Program at 2023 MDA Conference

April 11, 2023
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First patient treated in the ASCEND study evaluating the potential benefit of investigational higher dose nusinersen in children, teens and adults previously treated with Evrysdi® (risdiplam) […]

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Cure SMA Announces Expanded Phase 8 of SMA Industry Collaboration

April 4, 2023
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Cure SMA is pleased to announce the launch of an expanded Phase 8 of our SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted […]

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Cure SMA Welcomes New Care Center Network Site!

March 22, 2023
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We’d like to give a warm welcome to Children’s Hospital Colorado as a newly added Cure SMA Care Center! Thank you to Loree, Ward and […]

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FDA Issues Safety Warning Regarding Neck Float Devices for Babies

August 18, 2022
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On June 28,2022, the U.S. Food and Drug Administration (FDA) issued a safety communication about using neck float with babies. This occurs when a serious […]

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Cure SMA Publishes Results from Survey Measuring Disease Burden in Adolescents and Young Adults

August 15, 2022
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As treatment options increase for adolescents and young adults living with SMA, we need tools to measure the effectiveness of these treatments from the patient’s […]

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Cure SMA Publishes Research Exploring What Is Important to SMA Clinical Trial Participants

August 15, 2022
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The recent availability of new treatments for SMA would not have been possible without the participation of SMA-affected individuals in clinical trials. Yet participating in […]

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Financial Planning with a Disability

June 17, 2021
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When you first learned that you or your child had SMA, you probably began analyzing your home life, your or your child’s education, and other […]

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Community Spotlight: Nikki McIntosh

November 25, 2020
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Nikki McIntosh is known as the founder of Rare Mamas, an online resource that supports and empowers mothers who have children with rare diseases. She […]

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Community Spotlight: Scurria Family

December 20, 2019
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John and Krista Scurria, of Baton Rouge, La., believe in a parent’s intuition. Krista first became worried about the development of her oldest child, Josh, […]

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