October 2020

Community Spotlight: Sarah Boggess, Research Coordinator, Ornamental Plant Pathology

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October has been National Disability Employment Awareness Month, with an official theme of Increasing Access and Opportunity. Throughout the month, we have been posting stories about adults with SMA in the workforce and are pleased to close out the month with this story about Sarah Boggess, 31, of Knoxville, TN. Sarah Boggess, of Knoxville, Tenn., is incredibly […]

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Summit of Strength Virtual Webinar Series Continues Its Success!

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A little more than six months ago, Cure SMA launched the Summit of Strength Virtual Webinar Series , a program designed to help support individuals and families with SMA manage the uncertainty of life in quarantine during the global COVID-19 pandemic. We have now hosted 13 Summit of Strength educational webinars and are coming to

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Cure SMA Immunizations Recommendations During Flu Season and Amidst the COVID-19 Pandemic

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Contributors: Dr. Mary Schroth and Dr. Robert Graham Influenza (or flu) is a serious respiratory infection, and people of any age can get it. Since 2010, the Centers for Disease Control and Prevention (CDC) estimates that influenza has resulted in between 140,000 and 810,000 hospitalizations each year and 12,000 to 61,000 deaths. There is always

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Scholar Rock Issues Community Statement with Update on SRK-015 in Patients with Types 2 and 3 SMA

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Scholar Rock, a clinical-stage biopharmaceutical company focused on the treatment of serious diseases in which protein growth factors play a fundamental role, today announced 6-month interim results from their clinical program for its product candidate SRK-015, a treatment being developed for spinal muscular atrophy (SMA). SRK-015 is a highly selective inhibitor of latent myostatin and

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Community Spotlight: Perspectives from Spencer Cook, Registered Accessibility Specialist

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October is National Disability Employment Awareness Month, with an official theme of Increasing Access and Opportunity. Throughout the month, we have been posting stories about adults with SMA in the workforce and are pleased to share this perspective column from Spencer Cook, as seen in the latest Fall issue of Directions. Living with a disability in the

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Community Spotlight: Kayley Shade of Sioux Falls Storm

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October is National Disability Employment Awareness Month, with an official theme of Increasing Access and Opportunity. Throughout the month, we will be posting stories about adults with SMA in the workforce and are pleased to share this story about Kayley Shade. Kayley Shade is a 28-year-old sports fan from Hartford, S.D. She has lived with spinal muscular

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NeurologyLive Article Now Available, Featuring an Interview with Cure SMA’s Dr. Mary Schroth

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    Through Cure SMA’s partnership with NeurologyLive, a new patient-centered article, “Early Intervention in SMA: How Access to Therapy Will Alter Disease Management As We Know It,” is now available for viewing online. This piece features an interview with Dr. Mary Schroth, Chief Medical Officer at Cure SMA, and discusses successes in newborn screening

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Community Spotlight: AJ Brockman of Brewhouse Gallery and Kelsey City Brewing Company

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October is National Disability Employment Awareness Month, with an official theme of Increasing Access and Opportunity. Throughout the month, we will be posting stories about adults with SMA in the workforce and are pleased to share this story about AJ Brockman, 32, of Palm Beach Gardens, FL. AJ Brockman says he wears many hats in life. No

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Cure SMA Publishes Paper in Partnership with NeurologyLive on Impact of COVID-19

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    Cure SMA has published a paper, titled “Spinal Muscular Atrophy and COVID-19: Guidance and Resources for Providers,” in partnership with NeurologyLive. The article highlights findings from a recent survey conducted by Cure SMA to measure the impact of COVID-19 on the spinal muscular atrophy (SMA) patient and family community. As of June 1,

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Novartis Presents New Zolgensma® Data Further Demonstrating Therapeutic Benefit

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    Novartis Gene Therapies today announced new interim data from the ongoing Phase 3 STR1VE-EU clinical trial for Zolgensma® (onasemnogene abeparvovec). The data demonstrates that patients with spinal muscular atrophy (SMA) Type 1 continued to experience significant therapeutic benefit, including event-free survival, rapid and sustained improvement in motor function, and motor milestone achievement, including

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