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) […]
To the full spinal muscular atrophy (SMA) community, we want you to know that Cure SMA is continuing to support you with information and resources related to the COVID-19 pandemic. The following frequently asked questions (FAQs) are designed to help address key concerns expressed by members of the SMA community about COVID-19 vaccination and provide
Answering Questions about COVID-19 Vaccination and SMA Read More »
Dear SMA Community, Although this year has brought with it many challenges, the SMA community continues to demonstrate its strength and resilience. Cure SMA remains committed to bringing you the information, resources, and support you need as we continue to navigate the COVID-19 pandemic. Last week, the Advisory Committee on Immunization Practices (ACIP)—a U.S. Centers
Cure SMA Shares Perspective on COVID-19 Vaccination Read More »
Nikki McIntosh is known as the founder of Rare Mamas, an online resource that supports and empowers mothers who have children with rare diseases. She and her husband, Tony, live in Southern California with their sons Mason, age 10, and Miles, age 8. But less than a decade ago, Nikki was a marketing executive and,
Community Spotlight: Nikki McIntosh Read More »
Dear Members of the SMA Community, As we celebrate National Family Caregivers Month this November, Biogen acknowledges the vital role caregivers have in our society, including within our spinal muscular atrophy (SMA) community. We also recognize that caregivers need our support more than ever. Caregivers in the SMA community face an especially unique set of
Biogen SMA Q4 2020 Community Statement Read More »
As we continue to quarantine and see a new wave of COVID-19 cases across the country, Cure SMA would like you to know that our work for the spinal muscular atrophy (SMA) community continues. We remain vigilant in our monitoring of the pandemic statistics and responding to the needs of the entire SMA community. Your
Now Available! New COVID-19 PPE Package from Cure SMA Read More »
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 »
