News

September 27, 2018

Community Spotlight: Adrienne Vollmer

Community Spotlight: Adrienne Vollmer

In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely advanced by the efforts of...

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Topics: Community & Awareness, Advocacy, Front Page News

September 24, 2018

Community Spotlight: Allyson Henkel

Community Spotlight: Allyson Henkel

My son Pete and I began advocating to have SMA added to the newborn screening panel in Pennsylvania in December of 2017. Pete was 13-years old, type II SMA. He realized the impact that early diagnosis and treatment was having on SMA babies and thought he could make a difference. He has. Here...

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Topics: Community & Awareness, Advocacy, Front Page News

September 17, 2018

Community Spotlight: The Lasko Family

Community Spotlight: The Lasko Family

After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as early as possible. Inspired by many others in the SMA community, we decided to pay a visit to our state senator's office in Annapolis...

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Topics: Community & Awareness, Advocacy, Front Page News

September 12, 2018

Cure SMA's Approach to Newborn Screening

Cure SMA's Approach to Newborn Screening

The complexities of newborn screening require a sophisticated, multifaceted approach. With this in mind, Cure SMA has been working on newborn screening through several different avenues, bringing our full resources to ensure that babies born with SMA have the opportunity to receive early...

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Topics: Support & Care, Advocacy, Research, Front Page News

September 12, 2018

SMA Newborn Screening Advancements

SMA Newborn Screening Advancements

The first FDA approval of a therapy for SMA has created an opportunity for our community to move forward on another of our long-term priorities: newborn screening. SMA is the leading genetic cause of death for infants, but we have an historic opportunity to change that through newborn...

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Topics: Our Impact, Advocacy, Front Page News

September 5, 2018

New York to Implement Newborn Screening for SMA October 1st

New York to Implement Newborn Screening for SMA October 1st

New York State will screen every child for SMA beginning October 1, according to the New York State Department of Health. New York joins Missouri, Utah, Minnesota, Indiana and Illinois as states that have adopted permanent screening for SMA.

Since 2016, New York has been screening for...

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Topics: Our Impact, Advocacy, Front Page News

August 15, 2018

Illinois Adopts Permanent SMA Screening

Illinois Adopts Permanent SMA Screening

Last night, Governor Bruce Rauner of Illinois signed SB 456, adding spinal muscular atrophy (SMA) to the state’s newborn screening panel.

The bill adds Illinois to a number of states who have already adopted permanent SMA screening, including Missouri, Utah, Minnesota and...

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Topics: Our Impact, Advocacy, Front Page News

July 17, 2018

Wisconsin Moves One Step Closer to SMA Newborn Screening

Wisconsin Moves One Step Closer to SMA Newborn Screening

The Wisconsin Secretary of Health Services, Linda Seemeyer, recently approved the addition of SMA to the newborn screening panel through the administrative rule making process. SMA was nominated in November 2017 for addition to the Wisconsin panel. In December 2017, the Umbrella Committee of...

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Topics: Our Impact, Advocacy, Front Page News

July 3, 2018

HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA

HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA

Health and Human Services Secretary Alex Azar today approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued on February 8, 2018, by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)....

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Topics: Our Impact, Advocacy, Front Page News

June 28, 2018

SMA Newborn Screening Moves Forward in New Jersey

SMA Newborn Screening Moves Forward in New Jersey

Earlier this month, the New Jersey State Senate Committee on Health, Human Services, and Senior Citizens unanimously approved S. 974. Introduced by Senator Troy Singleton, the bill would add SMA to the New Jersey’s...

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Topics: Our Impact, Advocacy, Front Page News

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