Cure SMA Advocacy Campaign Leads to Congressional Support for More SMA Research

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Congress has recognized the unmet and new needs of individuals with SMA by including legislative language in must-pass legislation asking the National Institutes of Health (NIH) to continue research in SMA. At the 2022 Cure SMA conference and throughout the summer, individuals with SMA and their families educated Congress about existing challenges faced by the […]

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Cure SMA to Hold Patient-Led Listening Session with FDA

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On Thursday, August 4, 2022, six members of the SMA community will have the opportunity to talk directly with the U.S. Food and Drug Administration (FDA) about their lived experiences with SMA and their unmet medical needs. This Patient-Led Listening Session will be a small, private teleconference attended by patient advocates, FDA representatives from the

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Shop New Cure Merch at Our Updated Online Store

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Cure SMA is pleased to announce the launch of our newly updated merch store! The merch store features all the most popular Cure SMA t-shirts, hats, zip-up jackets, and more, as well as new items, which include: Black Performance Full-Zip Fleece Bucket Hat Women’s White Reflective Performance Half Zip Women’s Performance Racerback Tank In addition

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Thank You for a Wonderful 2022 Annual SMA Conference!

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Thank you to everyone who attended the 2022 Annual SMA Conference at the Disneyland Hotel in Anaheim, California! It was an impactful weekend of opportunities to connect, learn, and have fun! We are happy to announce that, including on-site registration, there were over 2,100 attendees in total, which was a record for the Annual SMA

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Cure SMA Attends Spring 2022 Conferences to Promote Findings from Industry Collaboration Initiatives

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Cure SMA is pleased to announce the participation of scientific leadership in the 2022 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference (March 13–16, 2022), the American Academy of Neurology (AAN) 2022 Annual Meeting (April 2–7, 2022,  and the upcoming Cure SMA Research & Clinical Care Meeting (June 15–17, 2022). Our poster presentations feature data from research

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Check Out Cure SMA’s State of SMA Report

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Cure SMA is pleased to announce the launch of its first annual State of SMA report. The purpose of this report is to share highlights from Cure SMA’s three databases: the membership database with patient reported outcomes on over 9700 affected individuals worldwide that also includes data from our annual community update survey, the SMA

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Cure SMA Announces Major Newborn Screening Milestone with Addition of Two New SMA Screening States

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With today’s newborn screening action by Oregon and New Mexico, Cure SMA has reached a major screening milestone for spinal muscular atrophy (SMA), with 97 percent of all U.S. newborns screened for SMA. Oregon and New Mexico confirmed with Cure SMA that babies born today in their states will now be screening for SMA, making

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FDA Approves Genentech’s Evrysdi (risdiplam) For Use in Babies Under Two Months with Spinal Muscular Atrophy

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Genentech, a member of the Roche Group, today announced that the U.S. Food and Drug Administration (FDA) has approved a label extension for Evrysdi® (risdiplam) to include babies under two months old with SMA. The approval is based on interim efficacy and safety data from the RAINBOWFISH study in newborns, which showed that the majority of

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Cure SMA Launches Request for Proposals for SMA Research Projects and Postdoctoral Fellowships

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Cure SMA is pleased to announce that we are accepting grant applications for funding of research projects and postdoctoral fellowships, under a competitive review by our Scientific Advisory Board (SAB).  Please click here to view the SAB roster. As we are now able to return to in-person activities for our SMA community, including conferences and

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