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

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 12, 2018

Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women's Hospital

Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women's Hospital

Cure SMA has awarded a $300,000 preclinical drug discovery grant to Kevin Hodgetts, PhD, at the Brigham and Women’s Hospital, for his project, " Pre-Clinical Development of LDN-5178 for the Treatment of SMA.”

This grant will be conducted by two academic research teams...

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Topics: Our Impact, Research, Front Page News

July 10, 2018

Cure SMA Awards $300,000 Grant to Umrao Monani, PhD, Columbia University

Cure SMA Awards $300,000 Grant to Umrao Monani, PhD, Columbia University

Cure SMA has awarded a $300,000 preclinical drug discovery grant to Umrao Monani, PhD, at Columbia University, for his project, " Restoring function at the NMJ: A novel means to treat SMA.”

A drug directed at SMN enhancement, Spinraza, has recently become available but is...

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Topics: Our Impact, Research, 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

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