News

May 31, 2018

Ohio Moves One Step Closer to SMA Newborn Screening

Ohio Moves One Step Closer to SMA Newborn Screening

The Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department of Health for a rulemaking process. Once these rules are developed and approved, SMA will be officially added to the...

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Topics: Our Impact, Advocacy, Front Page News

May 14, 2018

Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy

Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy

On Friday, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID).

Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely...

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Topics: Our Impact, Advocacy, Front Page News

May 9, 2018

SMA Advocates Meet With House and Senate Offices

SMA Advocates Meet With House and Senate Offices

On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA...

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Topics: Our Impact, Advocacy, Front Page News

April 24, 2018

SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

On Thursday, April 26, more than 70 chapter leaders, event organizers and board/committee members, representing 24 states and DC, will gather in Washington DC for two days of networking, learning, and advocacy. The activities include a day of advocacy on Capitol Hill, meeting with House and...

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Topics: Community & Awareness, Advocacy, Front Page 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

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