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Cure SMA Applauds Federal Agency Decision that Should Lead to Better Insurance Coverage for Seat Elevation Systems in Power Wheelchairs
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 […]
Read More ›Biogen Announces New Updates Across its SMA Research Program at 2023 MDA Conference
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) […]
Read More ›Cure SMA Announces Expanded Phase 8 of SMA Industry Collaboration
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 […]
Read More ›Cure SMA Welcomes New Care Center Network Site!
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 […]
Read More ›FDA Issues Safety Warning Regarding Neck Float Devices for Babies
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 […]
Read More ›Cure SMA Publishes Results from Survey Measuring Disease Burden in Adolescents and Young Adults
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 […]
Read More ›Cure SMA Publishes Research Exploring What Is Important to SMA Clinical Trial Participants
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 […]
Read More ›Financial Planning with a Disability
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 […]
Read More ›Community Spotlight: Nikki McIntosh
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 […]
Read More ›Community Spotlight: Scurria Family
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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