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
January 4, 2018
On December 27, the Minnesota Commissioner of Health accepted the recommendation of the state's Advisory Committee on Heritable and Congenital Disorders to add SMA to Minnesota’s newborn screening panel. With this decision, Minnesota becomes the second state, after Missouri, to adopt permanent newborn screening for SMA.
December 18, 2017
SMA advocates across the country are working tirelessly with Cure SMA to educate state decision makers on newborn screening. In Maryland and Minnesota, the states’ Newborn Screening Advisory Committees voted to approve a recommendation to add SMA to the state panel. We now await final...
December 12, 2017
On Wednesday, November 29 more than 160 people from the SMA community – including government and industry partners – gathered for the 7th Annual “Hope on the Hill” Congressional Dinner in Washington, D.C. Several members of congress attended the dinner including Rep....