Advocacy
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 […]
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 […]
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 […]
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 […]
#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 […]
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 […]
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 […]
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 […]
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 […]
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 […]