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

October 13, 2017

Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening

Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening

On Tuesday, Cure SMA staff members and family advocates, and clinicians from the University of Utah, met with Senator Orrin Hatch (R-UT) to discuss newborn screening for spinal muscular atrophy. Senator Hatch was an original sponsor of the Newborn Screening Saves Lives Act of 2007, which...

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Topics: Our Impact, Advocacy, Front Page News

September 20, 2017

Newborn Screening Advocacy Update

Newborn Screening Advocacy Update

At our Annual SMA Conference in July, we announced a grassroots campaign to implement newborn screening for SMA in all 50 states. We know that newborn screening and early treatment is the best chance we have to change the course of SMA for the next generation and beyond. We challenged our...

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Topics: Community & Awareness, Advocacy, Front Page News

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