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
Accessible Air Travel Update – Next Steps Read More »
Cure SMA is pleased to announce the release of new resources to support our community’s ability to navigate the evolving landscape of SMA clinical trials. These resources are intended to build knowledge in clinical trial procedures and preparation, to enhance awareness regarding actively recruiting clinical trials and sites, and to empower our community in their
Cure SMA Launches New Resources to Enhance Clinical Trial Access Read More »
Cure SMA is pleased to announce the launch of an expanded Phase 9 of our SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted partnership that brings together pharmaceutical companies, SMA Europe, Cure SMA, and other nonprofit organizations to share information, ideas, and data to benefit the broader SMA community. Through the Industry Collaboration,
Cure SMA Announces Expanded Phase 9 of SMA Industry Collaboration Read More »
On April 19, 2024, Biogen released an update to the SMA community sharing recent data presentations from Spring conferences and latest updates from their SPINRAZA® (nusinersen) clinical development program. Read the full community statement here. “We aspire to address the unmet needs of the SMA community and are grateful to individuals throughout the community for
Biogen Releases SMA Community Letter Read More »
For the past seven years, the Cure SMA Community Update Survey has collected data and information on the SMA community’s experiences and daily challenges. Every single individual with SMA and their families bring a unique perspective that, collectively, help us adapt to the changing landscape of SMA. Data from the survey also informs Cure SMA’s
Participate in the Annual Cure SMA Community Update Survey – Open Now! Read More »
Each year, Cure SMA invites scientists from around the world to submit funding proposals for basic research projects that address specific unanswered questions in SMA biology. Our Scientific Advisory Board then ranks the submitted proposals on both their scientific merit and relevance to Cure SMA’s research priorities. Funding is awarded to the highest ranked projects.
Cure SMA’s year-long advocacy campaign to educate Congress and the Administration about the unmet needs of individuals with spinal muscular atrophy (SMA) has concluded with a major legislative victory. This weekend, the President signed into law a government funding bill that included a provision in support of new SMA research at the National Institutes of
Government Funding Bill Supports New SMA Research to Address Unmet Needs Read More »
