News

April 18, 2018

Spring 2018 Issue of Compass Now Available Online

Spring 2018 Issue of Compass Now Available Online

The Spring 2018 issue of Compass is now available online. The issue covers Cure SMA’s newborn screening efforts, including how NBS can help children diagnosed with SMA, the addition of SMA to the federal Recommended...

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Topics: Research, Advocacy, Front Page News

March 23, 2018

House and Senate Vote to Increase Federal Funding for Newborn Screening Programs

House and Senate Vote to Increase Federal Funding for Newborn Screening Programs

Today, Congress passed a new federal spending bill, increasing funding for several critical newborn screening programs, that the President also signed. The bill increases funding for the Health Resources and Services Administration (HRSA) Heritable Disorders Program by more than $2...

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Topics: Support & Care, Advocacy, Front Page News

March 9, 2018

Indiana is the Fourth State to Adopt Permanent SMA Screening

Indiana is the Fourth State to Adopt Permanent SMA Screening

Last night, Governor Eric Holcomb of Indiana signed HB 1017, adding spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID) to the state’s newborn screening panel.

The bill makes Indiana the fourth state in the country to adopt permanent SMA screening, following...

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Topics: Community & Awareness, Advocacy, Front Page News

February 28, 2018

SMA Newborn Screening Moves Forward in Indiana, Ohio and Georgia

SMA Newborn Screening Moves Forward in Indiana, Ohio and Georgia

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

Indiana Poised to Become the Fourth State to Adopt SMA Screening

In Indiana, HB 1017 has been passed by both the House and Senate, and is...

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Topics: Community & Awareness, Advocacy, Front Page News

February 28, 2018

#ShowYourRare and Raise SMA Awareness on World Rare Disease Day

#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 to us because it is a time for individuals impacted by a rare disease—or those whose loved ones are impacted—to...

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Topics: Community & Awareness, Advocacy, Front Page News

February 8, 2018

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

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 is an important step toward our goal of having every baby born in the United States screened for...

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Topics: Our Impact, Advocacy, Front Page News

February 6, 2018

Utah Becomes First State to Implement Permanent Screening for SMA

Utah Becomes First State to Implement Permanent Screening for SMA

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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Topics: Our Impact, Advocacy, Front Page News

February 2, 2018

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

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 whether to recommend newborn screening for spinal muscular atrophy. This decision is an important step toward our goal of having every baby born in the United States...

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Topics: Our Impact, Advocacy, Front Page News

January 19, 2018

SMA Industry Collaboration Releases Spinal Muscular Atrophy Voice of the Patient (VoP) Report

SMA Industry Collaboration Releases Spinal Muscular Atrophy Voice of the Patient (VoP) Report

Cure SMA and our partners in the SMA Industry Collaboration are pleased to announce the release of the Spinal Muscular Atrophy Voice of the Patient (VoP) Report. This report is a thorough written account...

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Topics: Our Impact, Advocacy, Front Page News

January 5, 2018

Cure SMA Launches Advocacy Action Network

Cure SMA Launches Advocacy Action Network

Working together, we’ve achieved tremendous success in advocating for ourselves, our families, and our whole community, particularly in the past few years.

Today, we’re building on this momentum with the launch of our

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Topics: Our Impact, Advocacy, Front Page News

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