Front Page News
#ShowYourRare and Raise SMA Awareness on World Rare Disease Day
Rare Disease Day is today, February 28! And we’re calling on our entire spinal muscular atrophy community to get involved. Rare Disease Day is important […]
Read More ›Last Week’s Webinar on Treatment Access and Clinical Trials Now Available
A recording of last week’s webinar updating the community on treatment access and clinical trials is now available online. A PDF of the webinar presentation […]
Read More ›Cure SMA Receives Generous Gift from the Weisman Family Foundations
The Weisman Family Foundations recently awarded $65,800 to Cure SMA, in order to further new scientific research, and to help provide access to treatments, clinical […]
Read More ›Phase 2 Clinical Trial Results for CK-2127107 Expected in Second Quarter of 2018
Cytokinetics is currently conducting a Phase 2 clinical trial of CK-2127107 – now referred to by the generic name, reldesemtiv – which is designed to […]
Read More ›Cure SMA Receives Generous Gift
Cure SMA is extremely pleased to announce a generous $620,000 gift has been made to the organization. The donation was made anonymously in honor of […]
Read More ›Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research
Biogen has provided the following community statement on the final results from CHERISH, a Phase 3 study of SPINRAZA. Dear Members of the SMA community, […]
Read More ›Additional Funding for SMA Care Centers Announced
Cure SMA is pleased to announce the second round of grants from $450,000 in funding, awarded to a total of 9 sites to help increase […]
Read More ›Cure SMA Announces Local Educational Symposiums in 16 US Locations
Cure SMA is pleased to announce a slate of one-day local symposiums, beginning late spring and continuing into fall 2018. The symposiums will be held […]
Read More ›Winter 2018 Compass Now Available Online
The winter 2018 issue of Compass is now available online. This issue covers Cure SMA’s community survey, and reviews how data is used to improve […]
Read More ›Advisory Committee on Heritable Disorders in Newborns and Children Recommends Nationwide Newborn Screening for Spinal Muscular Atrophy
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) today recommended that newborn screening for spinal muscular atrophy be implemented nationwide. This decision […]
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