News

December 12, 2017

Cure SMA-Funded Research Results in 21 Published Journal Articles

An important goal of our research funding strategy is to share scientific findings with the broader scientific community. To help accomplish this goal, scientists who receive Cure SMA funding often publish their findings in peer-reviewed journals. Published articles allow the experiments and results to be reviewed and vetted by other...

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Topics: Our Impact, Research, Front Page News

December 12, 2017

“Hope on the Hill" Congressional Dinner Recap

“Hope on the Hill

On Wednesday, November 29 more than 160 people from the SMA community – including government and industry partners – gathered for the 7th Annual “Hope on the Hill” Congressional Dinner in Washington, D.C. Several members of congress attended the dinner including Rep....

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Topics: Events & Fundraising, Advocacy, Front Page News

December 11, 2017

Cytokinetics Publishes Clinical Trial Data for CK-2127107

Cytokinetics Publishes Clinical Trial Data for CK-2127107

Cytokinetics, Inc. recently announced the publication of results from three early clinical trials in healthy volunteers that evaluated safety, tolerability, pharmacokinetics, and pharmacodynamics of CK-2127107. The data supports the ongoing Phase 2 trial of the drug in patients with spinal...

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Topics: Clinical Trials, Research, Front Page News

December 4, 2017

New Merchandise Options Now Available in Cure SMA Online Shop

New Merchandise Options Now Available in Cure SMA Online Shop

Just in time for the holidays, Cure SMA has added new merchandise items to our online shop! These fun items include a baseball tee for adults and children, onesies for the newest members of your family, performance half zip shirts for both men and women, a baseball hat and a Cure SMA vinyl...

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Topics: Community & Awareness, Our Impact, Front Page News

November 27, 2017

Cure SMA-Funded Researcher, Stephen Kolb, Publishes Paper

Cure SMA-Funded Researcher, Stephen Kolb, Publishes Paper

Cure SMA-funded researcher Stephen Kolb has published a paper in the journal Annals of Neurology, on the results of a study comparing infants affected by SMA with healthy infants of the same age. This paper reported on...

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Topics: Our Impact, Research, Front Page News

November 20, 2017

7th Annual Hope on the Hill Congressional Dinner Achieves $1 Million Milestone

7th Annual Hope on the Hill Congressional Dinner Achieves $1 Million Milestone

This year’s 7th Annual “Hope on the Hill” Congressional Dinner will be held on Wednesday, November 29, bringing together families, government, and industry to mark the first-ever FDA approval of a treatment for SMA, and look forward to the next stages for our community....

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Topics: Our Impact, Events & Fundraising, Front Page News

November 14, 2017

SMA Advocates Testify at Federal Newborn Screening Meeting

On Wednesday, November 8, advocates testified at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) in support of spinal muscular atrophy newborn screening efforts at the federal division of Health and Human Services.

The advisory committee reviews conditions for addition to the Recommended Uniform...

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Topics: Our Impact, Advocacy, Front Page News

November 7, 2017

Biogen Issues Community Update on Spinraza

Biogen Issues Community Update on Spinraza

Biogen has provided the following community statement on Spinraza. 

Dear Members of the SMA community,

As part of our commitment to the SMA community to provide ongoing and comprehensive communications about SPINRAZA® (nusinersen), we are pleased to share that the...

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Topics: Clinical Trials, Research, Front Page News

November 7, 2017

2017 World Muscle Society Congress Recap

From October 3rd through October 7th, Cure SMA attended the 22nd International Annual Congress of the World Muscle Society (WMS) in Saint Malo, France. WMS is the premier annual congress on neuromuscular disorders, attended by established and young physicians, researchers, therapists and neuropathologists from all over the world.

Cure...

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Topics: Community & Awareness, Research, Front Page News

November 1, 2017

New Clinical Trial Data Published in New England Journal of Medicine

Two new papers of clinical trial data for spinal muscular atrophy were published today in the November issue of the New England Journal of Medicine (NEJM). NEJM is one of the most prestigious scientific journals in the US, and this dual publication reflects the scientific community's increasing interest in and engagement with SMA...

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Topics: Clinical Trials, Front Page News

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