As 2024 draws to a close, Cure SMA reflects on an extraordinary year of advocacy milestones that have advanced the priorities of individuals with spinal muscular atrophy (SMA) and their families. From policy wins to meaningful events, we celebrate the SMA community for their role in the following highlights: 100% of States Screening Newborns for […]
Cure SMA Advocacy Highlights of 2024 Read More »
Cure SMA is thrilled to share a major win for the SMA community: the U.S. Department of Transportation (DOT) has finalized its rule on ensuring safe accommodations for air travelers with disabilities using wheelchairs. This significant advancement underscores the importance of equity in air travel and represents a critical step toward making flights safer and
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Individuals with spinal muscular atrophy (SMA) and their families recognized congressional champions and celebrated advocacy progress at Cure SMA’s Hope on the Hill event. U.S. Representative Sam Graves (MO-6) Photo: Jay Mallin U.S. Representative Pete Stauber (MN-8) Photo: Jay Mallin U.S. Representative Mark DeSaulnier (CA-10) Photo: Jay Mallin This year’s event, which was held on
SMA Community Advocacy Wins and Champions Celebrated at Cure SMA Event Read More »
Thank you for being an essential part of this journey and for believing in our mission. As we mark 40 years of dedicated service to the spinal muscular atrophy (SMA) community, we reflect on our journey and the incredible milestones we’ve achieved together. In 1984, a small group of parents founded Families of Spinal Muscular
Celebrate 40 Years of Impact – Join Us in Making a Difference! Read More »
As part of our ongoing efforts to drive quality health care standardization and improvements for the SMA community, Cure SMA is pleased to announce the next publication in a series of resources designed to support healthcare professionals, and individuals with SMA, and their caregivers. “Spinal Muscular Atrophy (SMA) Update in Best Practice: Recommendations for Treatment
We’re kicking off our Mission, Milestones, Momentum Year-End Campaign with an incredible $50,000 matching gift. In honor of Hunter Rhodes, living with SMA, the Johns Family has generously donated $50,000 and has challenged the SMA community to double their impact by joining them in making a gift to Cure SMA today–no matter how big or
Make an Impact with Cure SMA’s Mission, Milestones, Momentum Campaign Read More »
Positive data confirm Evrysdi efficacy and safety in children first treated pre-symptomatically before 6 weeks of age, with most achieving motor milestones similar to children without SMA All children were able to swallow and feed orally, with none requiring permanent ventilation Evrysdi is the only non-invasive SMA therapy and is approved in over 100 countries,
Cure SMA is thrilled to announce the 2025 San Juan, Puerto Rico Summit of Strength,taking place on Saturday, February 1. The Summit of Strength is a community educational program hosted by Cure SMA. These in-person events provide attendees the opportunity to learn from an array of national and local experts surrounding topics that are valuable to
Cure SMA Hosting Puerto Rico Summit of Strength & Walk-N-Roll Read More »
Along with funding SMA research and care, Cure SMA provides thousands of individuals and families with vital support and resources that help people navigate life with SMA. Travel should be accessible for everyone but we know that is not often the case. With this in mind, Cure SMA is thrilled to launch some new travel
Findings from Part B and Part C of the DEVOTE study support the clinical benefits of a higher dose regimen of nusinersen (50/28 mg) in both individuals previously treated and treatment-naïve to nusinersen Investigational regimen also shows more rapid slowing of neurodegeneration, as measured by neurofilament Biogen plans to submit regulatory applications around the world
