News

December 10, 2018

Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment

Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment

The SMA community has multiple victories to celebrate as the year comes to an end. Thank you to all our amazing families and advocates who have and continue to make this progress possible.

Virginia Adopts SMA Newborn Screening

Last month, Virginia’s Newborn Screening...

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Topics: Community & Awareness, Advocacy, Front Page News

November 13, 2018

8th Annual "Hope on the Hill" Congressional Dinner Will Be Held Later This Month in Washington D.C.

8th Annual

The 8th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 27, bringing together SMA families, government officials, and industry leaders to look forward to the...

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Topics: Advocacy, Events & Fundraising, Front Page News

October 30, 2018

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

Progress is currently being made in several states for getting SMA added to Newborn Screening panels. We are delighted to share this news with you as some states move closer to adoption of SMA Newborn Screening.

Kansas Adopts SMA Newborn Screening

Kansas has adopted SMA...

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Topics: Our Impact, Advocacy, Front Page News

October 17, 2018

North Carolina to Screen Newborns for SMA Through Early Check

North Carolina to Screen Newborns for SMA Through Early Check

Early Check, a new research study led by RTI International, is now available for newborn babies in North Carolina. Early Check is a free screening study designed to identify children with rare health conditions before symptoms appear and study the benefits of early treatments. New and...

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Topics: Our Impact, Advocacy, Front Page 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

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