Cure SMA’s New Year Letter for 2021
Dear SMA Community, While 2020 did not pan out as we had expected, Cure SMA remains extremely optimistic about the future for our community in 2021 and beyond. Here are the reasons why: ...
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. ...
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 ...
Annual Cure SMA Community Update Survey Ready for Your Input
Navigating the recent global health crisis, Coronavirus (COVID-19), has reinforced for us the importance of understanding what the SMA community is thinking, feeling, and experiencing. This allows us to more effectively support those ...
Cure SMA Launches “Spotlight on SMA” Partnership with Neurology Reviews
Cure SMA is pleased to announce the release of “Spotlight on SMA: The Urgent Need for Early Diagnosis in Spinal Muscular Atrophy,” a supplement developed in collaboration with Neurology Reviews. The goal of ...
Cure SMA Establishes an Adult Advisory Council
We are happy to announce the establishment of the Adult Advisory Council. The Adult Advisory Council is a volunteer council that provides guidance, advice, and feedback to Cure SMA in relation to several ...
Cure SMA Awards Grants to Four States to Expediate the Implementation of SMA Newborn Screening
On July 3, 2018, Health and Human Services Secretary Alex Azar approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued on February 8, 2018, by the Advisory ...
Updated SMA Drug Pipeline Now Available
We’ve recently released an update to the SMA drug pipeline. This latest version includes: 23 active programs, including two approved therapies. 15 pharmaceutical partners. 6 programs in clinical trials. An ever-increasing breadth of ...
Cure SMA Awards $150,000 Grant to Krysta Engel, PhD, University of Colorado
Audrey Lewis founded Families of SMA, now Cure SMA, 34 years ago. Audrey recognized early on the importance of attracting new and talented researchers to SMA, with the hope that they would commit ...
Spring 2019 SMA Newborn Screening Update
We are thrilled to announce that Missouri, Pennsylvania and Vermont have now implemented permanent statewide SMA newborn screening, making 6 states that are now permanently screening statewide for SMA. Several other states have ...
Community Update Survey Q&A
Cure SMA recently launched the third annual Community Update Survey to address important issues in SMA treatment and care. The Community Survey covers several areas that are relevant to the real-world experiences of ...
Cure SMA Care Center Network Expands to 10 Sites
In 2018, Cure SMA launched the SMA Care Center Network, a collection of specialized clinics across the nation to help ensure all those living with spinal muscular atrophy (SMA) are able to receive ...