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 24, 2018

2018 Annual SMA Conference Booklet Released

2018 Annual SMA Conference Booklet Released

The 2018 Annual SMA Conference Booklet is now posted

The 112-page booklet includes information on workshops, special events and details of the 30th Anniversary SMA Conference, including:

1. A...

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Topics: Conference, Front Page News

May 22, 2018

Biogen Releases Community Statement on Spinraza Access and New Data

Biogen Releases Community Statement on Spinraza Access and New Data

Biogen has released the following community statement on Spinraza access and new research data.

Dear Members of the SMA community,

Thank you for your continued support, efforts to raise awareness about SMA, and participation in clinical trials and studies as we seek to expand...

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Topics: Clinical Trials, Research, Front Page News

May 21, 2018

2018 Family Friendly Poster Session Presenters Announced

2018 Family Friendly Poster Session Presenters Announced

The Family Friendly Research Poster Session allows for one-on-one interactions between families and researchers. Cure SMA has invited researchers, who are attending SMA Researcher Meeting, to present family friendly research posters. During the event, families are encouraged to rotate to the...

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Topics: Conference, 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 17, 2018

Cure SMA and Cytokinetics Announce National Platinum Partnership for 2018

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Topics: Support & Care, Events & Fundraising, Front Page News

May 15, 2018

Novartis Successfully Completes Acquisition of AveXis, Inc.

Novartis Successfully Completes Acquisition of AveXis, Inc.

Dear SMA Community, 

Following the announcement last month, we wanted to let you know that AveXis (the gene therapy company developing a new approach to treat SMA known as AVXS‐101) is

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Topics: Research, 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

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