Each year since 2017, Cure SMA has conducted a Community Update Survey. This online questionnaire is sent to all individuals with spinal muscular atrophy (SMA) and caregivers of children with SMA in the Cure SMA database to capture self- and caregiver-reported data on disease characteristics and health outcomes. Cure SMA uses data collected through the […]
Results from Annual SMA Community Update Survey Now Published Read More »
Cure SMA is excited to be announcing—along with support from Biogen—the launch of two new programs for adults with SMA. First, we will test your knowledge of random (and useless) facts with an Adults with SMA Virtual Trivia Night. Then, in the coming months, we will begin hosting an Adults with SMA Virtual Book Club.
Cure SMA Announces Two New Virtual Programs for Adults with SMA Read More »
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
Community Spotlight: Sarah Boggess, Research Coordinator, Ornamental Plant Pathology Read More »
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
Summit of Strength Virtual Webinar Series Continues Its Success! Read More »
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
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
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
Community Spotlight: Perspectives from Spencer Cook, Registered Accessibility Specialist Read More »
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
Community Spotlight: Kayley Shade of Sioux Falls Storm Read More »
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
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
Community Spotlight: AJ Brockman of Brewhouse Gallery and Kelsey City Brewing Company Read More »
