2018 SMA Researcher Meeting Summary: Clinical Research Studies for SMA

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The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior

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2018 SMA Researcher Meeting Summary: Basic Research Podium Presentations

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The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior

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2018 SMA Researcher Meeting Special Session Summary: Clinical and Basic Questions of SMA in the Era of SMN Repletion: Challenge and Opportunity

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The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior

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Wisconsin Moves One Step Closer to SMA Newborn Screening

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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 Wisconsin newborn screening specialists who specialize in caring for children with

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Summit of Strength Program Kicks Off in Cincinnati

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As a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized, local support. On Saturday, Cure SMA held its inaugural Summit of Strength in Cincinnati, OH. This is the first of 16 one-day mini conferences, sponsored by AveXis, held in 16 cities across

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

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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 working together to identify new treatments for SMA. The two teams are

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Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years

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Dr. John Kissel has treated patients with neuromuscular disorders from all over the United States. He specializes in spinal muscular atrophy and has been instrumental in his practice at one of the country’s leading centers in neuromuscular medicine. Dr. Kissel’s interest in SMA began during his time as a fellow at Ohio State University Hospital

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Roche Releases Community Update on Risdiplam

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The following is a community update from Genentech/Roche on the risdiplam (RG7916) program. Dear SMA advocacy community, As requested, we are very pleased to share an update on the RG7916 program. We would also like to extend a special thanks to study participants and their families for their incredible commitment to advancing the progress of

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

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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 unlikely to benefit all patients with maximal effectiveness. The objective

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HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA

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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). With Secretary Azar’s signature, SMA becomes part of the Recommended Uniform Screening Panel (RUSP),

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