Author name: Sarah McCall

Cure SMA Publishes Quality of Life in Teens and Young Adults Manuscript in Orphanet Journal of Rare Diseases

Current knowledge regarding clinical meaningfulness and quality of life amongst teens and young adults with spinal muscular atrophy (SMA) is limited. Much of the available qualitative data on this population has been obtained from the perspective of the parents/caregivers rather than the individuals themselves. Knowing this, Cure SMA is pleased to announce the publication of a manuscript, […]

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Cure SMA Career Panel Webinar Series to Launch in February

Cure SMA is excited to invite all members of the SMA community to join our new, three-part Career Panel Webinar Series, generously sponsored by Biogen. During these 1-hour webinars, adults with SMA will share honest and insightful perspectives into their career journeys—from accomplishments to challenges and everything in between. Attendees will be able to submit

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Cure SMA Announces 2021 Summit of Strength Program Events

Cure SMA is excited to share that we will be continuing the Summit of Strength Program in 2021, offering a hybrid of the original in-person events and the webinars launched in 2020. This year marks the program’s fourth year, having brought together nearly 3,000 attendees from across the U.S. in-person, and close to 1,300 live

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Cure SMA Launches Physical Therapy Webinar Series

There are plenty of reasons for everyone to exercise regularly, but for the spinal muscular atrophy (SMA) community, exercise has potential benefits in supporting greater muscle strength and motor function. With many still at home due to the ongoing pandemic, Cure SMA is pleased to share a new Physical Therapy Webinar Series, sponsored by Biogen

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Team Cure SMA Launches 2021 Race Series for Full SMA Community

You can get a head start on your healthy New Year’s resolutions and sign up today for our 2021 Team Cure SMA endurance race series! Team Cure SMA is an endurance program that connects runners and cyclists with Cure SMA. Over the last two years, Team Cure SMA athletes from across the country have trained

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Cure SMA to Host Webinar Series on Wellness for the SMA Community

With consideration of the current COVID-19 pandemic and beyond, Cure SMA continues to advocate for the importance of overall health and wellness. Therefore, we are pleased to announce we will be hosting a new three-part educational program, the Wellness Webinar Series, sponsored by Genentech. All members of the spinal muscular atrophy (SMA) community are invited

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Cure SMA, Novartis Publish Economic Burden of SMA Analysis in Journal of Market Access & Health Policy

Recently, Cure SMA and colleagues at Novartis Gene Therapies published a manuscript titled, “Economic burden of spinal muscular atrophy: an analysis of claims data” in the Journal of Market Access & Health Policy. The purpose of the manuscript was to describe an analysis that was conducted measuring direct costs related to spinal muscular atrophy (SMA)

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Results from Annual SMA Community Update Survey Now Published

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

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Summit of Strength Virtual Webinar Series Continues Its Success!

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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