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Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research

February 14, 2018
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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, […]

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Additional Funding for SMA Care Centers Announced

February 14, 2018
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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 […]

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Cure SMA Announces Local Educational Symposiums in 16 US Locations

February 12, 2018
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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 […]

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Winter 2018 Compass Now Available Online

February 9, 2018
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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 […]

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Advisory Committee on Heritable Disorders in Newborns and Children Recommends Nationwide Newborn Screening for Spinal Muscular Atrophy

February 8, 2018
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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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Utah Becomes First State to Implement Permanent Screening for SMA

February 6, 2018
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The Utah Department of Public Health has announced that, effective immediately, all newborns born in the state will be screened for spinal muscular atrophy. This […]

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Federal Committee to Vote on Spinal Muscular Atrophy Newborn Screening on Thursday

February 2, 2018
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On Thursday, February 8, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), a federal committee that oversees newborn screening, will vote on […]

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Preliminary Data from FIREFISH Trial in Type 1 SMA Infants Presented at the International Scientific Congress on Spinal Muscular Atrophy

January 30, 2018
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PTC Therapeutics, Inc. recently announced the presentation of early interim data from Part 1, the dose-finding portion of the FIREFISH study. FIREFISH is a two-part […]

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AveXis Releases Community Statement on Expanded Clinical Trials

January 26, 2018
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AveXis has provided the following community statement on AVXS-101. Dear SMA Community, At AveXis, the gene replacement therapy company developing a new approach to treat […]

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Cure SMA to Host Webinar on Treatment Access and Clinical Trials on February 15

January 25, 2018
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On Thursday, February 15, at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST), Cure SMA will hold a webinar updating the community on treatment access and clinical […]

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