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

August 10, 2017

SMA Families and Cure SMA Staff Visit Capitol Hill for Advocacy Efforts

SMA Families and Cure SMA Staff Visit Capitol Hill for Advocacy Efforts

On August 2nd, members of the spinal muscular atrophy community kicked off SMA Awareness Month by meeting with a dozen Senate and House congressional offices to advocate for issues that impact our community. The teams conducting these visits included families affected by SMA, and Cure SMA...

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Topics: Our Impact, Advocacy, Front Page News

July 10, 2017

Missouri is the First State to Institute Newborn Screening for Spinal Muscular Atrophy

Governor Eric Greitens today signed into law Missouri Senate Bill 50, instituting newborn screening for spinal muscular atrophy (SMA). The bill makes Missouri the first state in the country to screen all newborns for SMA. The legislation was sponsored by Representative Becky Ruth, a legislator with a longstanding commitment to expanding...

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Topics: Advocacy, Front Page News

July 2, 2017

Cure SMA Launches Newborn Screening Grassroots Advocacy Campaign for Spinal Muscular Atrophy Newborn Screening

Today, as part of the Annual SMA Conference, we announced the launch of a new grassroots advocacy campaign to implement newborn screening for spinal muscular atrophy. Today’s kick-off event is a symposium on newborn screening advocacy, held as part of the Annual SMA Conference in Orlando, FL.

One state, Missouri, has legislation...

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Topics: Advocacy, Front Page News

June 23, 2017

Call-to-Action: Senate Health Care Bill Released and Vote Expected Next Week

Call-to-Action: Senate Health Care Bill Released and Vote Expected Next Week

Yesterday, members of the Senate released draft text of their much awaited legislation called the Better Care Reconciliation Act (“Better Care Act”) of 2017. As you’ll recall from...

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Topics: Advocacy, Front Page News

June 21, 2017

Cure SMA Update - Senate Healthcare Bill

Cure SMA Update - Senate Healthcare Bill

The US Senate is currently working on legislation to modify the Affordable Care Act. Though details of the Senate’s plan are not yet available, legislation could be released as early as Thursday or Friday of this week. As Senators consider various options it is important that they keep...

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Topics: Advocacy, Front Page News

June 15, 2017

SMA Newborn Screening Moves Forward in Missouri and Florida

SMA Newborn Screening Moves Forward in Missouri and Florida

The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in two states.

Missouri to Become the First State to Screen for SMA

In Missouri, Senate Bill 50 has been passed by both the Missouri House and Missouri...

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Topics: Community & Awareness, Advocacy, Front Page News

June 14, 2017

Cure SMA Advocacy Activities for the 2017 Year-to-Date

Cure SMA Advocacy Activities for the 2017 Year-to-Date

The first half of 2017 has been an active six months for Cure SMA and SMA advocates. Cure SMA and members of our community have been working with stakeholders groups across multiple settings to ensure our patients’ voices are heard. Below is a summary of the key issues and audiences...

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Topics: Community & Awareness, Advocacy, Front Page News

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