Author name: Morgan Tuttle

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

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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 SMN protein, which is expressed in every cell in the body. […]

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2018 Annual SMA Conference Booklet Released

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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 complete schedule, full agenda, and descriptions and speaker bios for the 56 workshops. 2. Details about many of the special events planned during the Annual SMA

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Biogen Releases Community Statement on Spinraza Access and New Data

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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 access to SPINRAZA® (nusinersen) for individuals with SMA around the world.

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2018 Family Friendly Poster Session Presenters Announced

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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 different posters to ask questions and learn directly from the researchers involved in each

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Spring 2018 Issue of Directions Now Available

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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 Series booklets.  Our biannual newsletter builds our community by sharing updates, stories and experiences. Families from all over the world connect with each other through Cure SMA

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Cure SMA and Cytokinetics Announce National Platinum Partnership for 2018

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Cure SMA and Cytokinetics are very pleased to announce that Cytokinetics has committed to a National Platinum Partnership for 2018. Cytokinetics will be supporting several of Cure SMA’s awareness, education, and fundraising initiatives for spinal muscular atrophy (SMA), at both the local and national level. As part of their partnership, Cytokinetics is sponsoring the 2018 Annual

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

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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 advanced by the efforts of Adrienne Vollmer, Graham’s mother, and State Representative Doug Gutwein, the bill’s

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SMA Advocates Meet With House and Senate Offices

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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 research and newborn screening. The visits also emphasized the

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

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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 patient reported outcome measures for use in SMA clinical trials and clinics.

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Uniting the SMA Community Through Local Programs and Support

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After her son William’s SMA type 2 diagnosis in April 2001, Heidi Johnson’s doctor immediately showed her the Cure SMA (then Families of SMA) website and said to look for support within the SMA community. “After arriving home, we took the doc’s advice and opened up [the website] where we felt the most amazing support.

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