Cure SMA’s Fall 2024 Walk-n-Roll events are open! By participating in our Walk-n-Roll, you can make a real difference in the lives of those affected by SMA. What is Walk-n-Roll Walk-n-Roll is a nationwide community fundraising and awareness event. Think of this celebratory environment almost like a block party just for the SMA community. […]
Fall 2024 Walk-n-Roll Registration is Open Read More »
Cure SMA is pleased to announce the publication of the first in a series of new resources to support the care of individuals living with Spinal Muscular Atrophy (SMA). As part of our ongoing efforts to drive care improvements for the entire SMA community, Cure SMA recently published, Spinal Muscular Atrophy (SMA) Update in Best
Novartis Gene Therapies recently released an update to the SMA community related to clinical trials and long term follow up studies of Zolgensma, in addition to recent publications. Read the full community statement here. “It has been wonderful to have seen so many of you at Summits of Strength and the Walk-n-Rolls already this year,
Novartis Gene Therapies Releases Spring SMA Community Letter Read More »
Table of Contents What is SMA How Common is SMA Types of SMA Causes of SMA Carrier Testing Symptoms of SMA Diagnosis SMA Newborn Screening Treatment for SMA Outlook / Prognosis Living with SMA Latest Updates on SMA SMA Research SMA Resources and Programs Clinical Trials and Studies Common SMA Questions Next Steps for SMA
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Cure SMA is pleased to announce the participation of scientific leadership in the 2024 Muscular Dystrophy Association (MDA) Virtual Clinical & Scientific Conference (March 3 – 6, 2024) and the 2024 International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Conference (May 5 – 8, 2024). We will also present these research findings at the upcoming
On May 16, after more than 2-years of advocacy and education by the SMA and disability communities, Cure SMA-supported legislation was signed into law making air travel safer and more accessible for all! What’s in the Law for Passengers with SMA and Other Disabilities The new law implements several key recommendations from the SMA community
SMA Community Advocacy Results in Key Accessible Air Travel Win Read More »
The U.S. Department of Health and Human Services (HHS) today finalized a rule to increase healthcare accessibility and strengthen federal protections against healthcare discrimination based on disability. The rule was published in the May 9, 2024 Federal Register. Cure SMA participated in the Washington, DC event where HHS announced the rule, which is the first
On May 3, 2024, Genentech released an update to the SMA community related to Evrysdi® (risdiplam) and Genentech’s activities in service of the SMA community. Read the full community statement here. “Many thanks to the entire SMA community who continue to inspire the broad work that we are doing from research to innovative programming. As
Genentech Releases SMA Community Letter Recapping Spring Activities Read More »
This week, Cure SMA urged the U.S. Department of Transportation (DOT) to strengthen and quickly implement its proposed rule on ensuring safe accommodations for air travelers with spinal muscular atrophy (SMA) and other disabilities who use wheelchairs. In the 9-page letter addressed to Secretary Pete Buttigieg, Cure SMA highlighted critical issues faced by individuals with
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