Author name: Sarah McCall

Living Unlimited with Spinal Muscular Atrophy: A Booklet for Adults with SMA

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Cure SMA is excited to announce our newest publication geared toward adults with SMA. Thanks to contributions and feedback from adults with SMA in our community, we have collectively pulled together this booklet on adult-specific topics of importance. Check out the booklet here! Topics covered in Living Unlimited with SMA include: Planning for your Future …

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Cure SMA Applauds Federal Agency Decision that Should Lead to Better Insurance Coverage for Seat Elevation Systems in Power Wheelchairs

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Thanks to the advocacy of individuals with spinal muscular atrophy (SMA) and others, the Centers for Medicare and Medicaid Services (CMS) now considers seat elevation systems in power wheelchairs as being “reasonable and necessary” for purposes of Medicare coverage. The federal agency updated its national policy to allow Medicare coverage for seat elevation systems in …

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Biogen Announces New Updates Across its SMA Research Program at 2023 MDA Conference

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First patient treated in the ASCEND study evaluating the potential benefit of investigational higher dose nusinersen in children, teens and adults previously treated with Evrysdi® (risdiplam) Baseline characteristics indicate all nine infants and toddlers enrolled in RESPOND had suboptimal clinical status in ≥2 areas after receiving Zolgensma® (onasemnogene abeparvovec); there were no new safety findings with subsequent …

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Novartis shares Zolgensma long-term data demonstrating sustained durability up to 7.5 years post-dosing; 100% achievement of all assessed milestones in children treated prior to SMA symptom onset

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Children in LT-001 treated after SMA symptom onset maintained or achieved additional milestones up to 7.5 years post one-time intravenous infusion All children (100%) in the presymptomatic intravenous cohort of LT-002 maintained or achieved all assessed motor milestones, including independent walking To date, more than 3,000 children with spinal muscular atrophy have been treated with …

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Cure SMA Awards $100,000 Grant to Saravanan Arumugam, PhD, Universidad de Seville

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Saravanan Arumugam, PhD, was awarded $100,000 for his research project, “Role of Cytosolic and Mitochondrial Ca2+ in the Pathogenesis of Spinal Muscular Atrophy.” Dr. Arumugam’s basic research grant is one of five awarded by Cure SMA in 2022 totaling $500,000. Meet Dr. Arumugam Tell us about yourself. I am a postdoctoral fellow in the Department …

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Cure SMA Announces Expanded Phase 8 of SMA Industry Collaboration

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Cure SMA is pleased to announce the launch of an expanded Phase 8 of our SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted partnership that brings together pharmaceutical companies, SMA Europe, Cure SMA, and other nonprofit organizations to share information, ideas, and data to benefit the broader SMA community. Through the Industry Collaboration, we fund …

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Congress Examines Ways to Improve Air Travel for People with Disabilities

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The air travel challenges of people with disabilities took center-stage this week in Congress through two separate congressional hearings. Cure SMA used the congressional action to once again highlight the experiences and recommendations of individuals with spinal muscular atrophy (SMA). This year, Congress must pass legislation related to the future of air travel in the …

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Cure SMA Welcomes New Care Center Network Site!

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We’d like to give a warm welcome to Children’s Hospital Colorado as a newly added Cure SMA Care Center! Thank you to Loree, Ward and Lyza Weisman for your generous donation supporting your local SMA Care Center – the Children’s Hospital Colorado. We also thank the Weisman Family Foundation and the Ritter Family Foundation. The …

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Cure SMA Awards $75,000 Grant to Lyndsay Murray, PhD, University of Edinburgh

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Lyndsay Murray, PhD, was awarded $75,000 for her research project, “Evaluating the impact of sequential versus simultaneous administration of SMN-inducing compounds on motor unit recovery in mouse models of SMA.” Dr. Murray’s basic research grant is one of five awarded by Cure SMA in 2022 totaling $525,000. Meet Dr. Murray Tell us about yourself. I …

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