April 18, 2018
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...
March 23, 2018
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...
March 9, 2018
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...
February 28, 2018
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...
February 28, 2018
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...
February 8, 2018
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...
February 6, 2018
February 2, 2018
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...
January 19, 2018
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...
January 5, 2018
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