News

December 4, 2018

Fall 2018 Issue of Compass Now Available

Fall 2018 Issue of Compass Now Available

The fall 2018 issue of Compass is now available online.

This issue of Compass covers the SMA Care Center Network and its goal of developing an evidence-based standard of care to improve the lives of people with...

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Topics: Support & Care, Our Impact, Front Page News

November 14, 2018

Cure SMA Launches "SMArt Moves" for Early Diagnosis and Treatment

Cure SMA Launches

Cure SMA today launches SMArt Moves, a new disease awareness and educational campaign to empower parents, pediatricians and other healthcare professionals to swiftly recognize and diagnose the early signs of motor delays. This allows infants and...

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Topics: Community & Awareness, Our Impact, 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 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 28, 2018

Cure SMA Provides Funding for "Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)" Published in Neurology

Cure SMA Provides Funding for

In a recent paper titled, “Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)” Dr. Chad Heatwole and others describe a cross-sectional study of 359 adults with SMA using the International SMA Patient Registry. The goal of the study was to determine the...

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Topics: Our Impact, Research, Front Page News

August 17, 2018

Cure SMA Provides Funding and Recruitment for the NeuroNEXT SMA Biomarker Study: Super Babies for SMA!

Cure SMA Provides Funding and Recruitment for the NeuroNEXT SMA Biomarker Study: Super Babies for SMA!

A recent paper published in the Journal of Contemporary Clinical Trials Communications titled, “Recruitment & retention program for the NeuroNEXT SMA Biomarker Study: Super Babies for...

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Topics: Our Impact, Research, 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

August 1, 2018

Community Spotlight: Brynne Willis

Community Spotlight: Brynne Willis

At 10 years old, Brynne Willis knew something was wrong; it was time for the Presidential Fitness Test required by public schools and she kept falling behind her peers.

“I kept falling every time I tried to run and was the last to complete the one-mile run,” said...

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Topics: Community & Awareness, Our Impact, Front Page News

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