Advocacy

Cure SMA Launches Advocacy Action Network

January 5, 2018
Posted in , ,

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 […]

Read More ›

Minnesota Becomes Second State to Adopt Newborn Screening for SMA

January 4, 2018
Posted in , ,

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 […]

Read More ›

Cure SMA Advocates Continue to Advance Newborn Screening Efforts

December 18, 2017
Posted in , ,

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’ […]

Read More ›

SMA Advocates Testify at Federal Newborn Screening Meeting

November 14, 2017
Posted in , ,

On Wednesday, November 8, advocates testified at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) in support of spinal muscular atrophy newborn […]

Read More ›

Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening

October 13, 2017
Posted in , ,

On Tuesday, Cure SMA staff members and family advocates, and clinicians from the University of Utah, met with Senator Orrin Hatch (R-UT) to discuss newborn […]

Read More ›

Newborn Screening Advocacy Update

September 20, 2017
Posted in , ,

At our Annual SMA Conference in July, we announced a grassroots campaign to implement newborn screening for SMA in all 50 states. We know that […]

Read More ›

SMA Families and Cure SMA Staff Visit Capitol Hill for Advocacy Efforts

August 10, 2017
Posted in , ,

On August 2nd, members of the spinal muscular atrophy community kicked off SMA Awareness Month by meeting with a dozen Senate and House congressional offices […]

Read More ›

Missouri is the First State to Institute Newborn Screening for Spinal Muscular Atrophy

July 10, 2017
Posted in ,

Governor Eric Greitens today signed into law Missouri Senate Bill 50, instituting newborn screening for spinal muscular atrophy (SMA). The bill makes Missouri the first […]

Read More ›

Cure SMA Launches Newborn Screening Grassroots Advocacy Campaign for Spinal Muscular Atrophy Newborn Screening

July 2, 2017
Posted in ,

Today, as part of the Annual SMA Conference, we announced the launch of a new grassroots advocacy campaign to implement newborn screening for spinal muscular […]

Read More ›

Call-to-Action: Senate Health Care Bill Released and Vote Expected Next Week

June 23, 2017
Posted in ,

Yesterday, members of the Senate released draft text of their much awaited legislation called the Better Care Reconciliation Act (“Better Care Act”) of 2017. As […]

Read More ›
Scroll to Top