News

May 31, 2018

Ohio Moves One Step Closer to SMA Newborn Screening

Ohio Moves One Step Closer to SMA Newborn Screening

The Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department of Health for a rulemaking process. Once these rules are developed and approved, SMA will be officially added to the...

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Topics: Our Impact, Advocacy, Front Page News

May 24, 2018

Cure SMA Awards $150,000 Grant to Kathryn Swoboda, MD, Massachusetts General Hospital

Cure SMA Awards $150,000 Grant to Kathryn Swoboda, MD, Massachusetts General Hospital

Cure SMA has awarded a $150,000 research grant to Kathryn Swoboda, MD, at the Massachusetts General Hospital, for her project, "Clinical and pathologic correlations in patients with early infantile-onset SMA.”

SMA is caused by mutations in the SMN1 gene resulting in low levels of...

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Topics: Our Impact, Research, Front Page News

May 17, 2018

Spring 2018 Issue of Directions Now Available

Spring 2018 Issue of Directions Now Available

The Spring 2018 issue of Directions is now available online. Check out our Support & Care publications page to download past issues of Directions and Cure SMA's Care...

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

May 14, 2018

Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy

Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy

On Friday, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID).

Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely...

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Topics: Our Impact, Advocacy, Front Page News

May 9, 2018

SMA Advocates Meet With House and Senate Offices

SMA Advocates Meet With House and Senate Offices

On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA...

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Topics: Our Impact, Advocacy, Front Page News

May 8, 2018

Cure SMA Awards $150,000 Grant to Chad Heatwole, MD, University of Rochester

Cure SMA Awards $150,000 Grant to Chad Heatwole, MD, University of Rochester

Cure SMA has awarded a $150,000 research grant to Chad Heatwole, MD, at the University of Rochester, for his project, " Development of a Clinically Relevant Outcome Measure for Pediatric SMA Therapeutic Trials.”

Dr. Heatwole and his team are working to develop SMA-specific...

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Topics: Our Impact, Research, Front Page News

April 24, 2018

The Discovery of Spinraza

The Discovery of Spinraza

SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein—called survival motor neuron protein or SMN protein—that is critical to the function of the nerves that control our...

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Topics: Our Impact, Research, Front Page News

April 23, 2018

There is Still Time to Complete Cure SMA's 2018 Community Survey

There is Still Time to Complete Cure SMA's 2018 Community Survey

Dear Members of the SMA Community,

For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate...

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Topics: Our Impact, Research, Front Page News

April 13, 2018

Cure SMA Awards $150,000 Grant to Bakri Elsheikh, MD, Ohio State University Wexner Medical Center

Cure SMA Awards $150,000 Grant to Bakri Elsheikh, MD, Ohio State University Wexner Medical Center

Cure SMA has awarded a $150,000 research grant to Bakri Elsheikh, MD, at the Ohio State University Wexner Medical Center, for his project, "Determine the motor unit response following SMN restoration in late-onset spinal muscular atrophy”.

Dr. Elsheikh and his team will study...

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Topics: Our Impact, Research, Front Page News

April 9, 2018

Cure SMA Database Findings Published in the Journal of Neuromuscular Diseases

Cure SMA Database Findings Published in the Journal of Neuromuscular Diseases

An important goal at Cure SMA is to collect data to better understand the SMA patient population, and then to report this data back to our industry partners, regulators, and payers. In collecting this data, we also hope to identify areas where additional care, advocacy, support, and research...

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Topics: Our Impact, Research, Front Page News

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