Search Results: Living with SMA issues
There is Still Time to Complete Cure SMA’s 2018 Community Survey
Dear Members of the SMA Community, For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, […]
Cure SMA Launches Second Annual Community Survey to Address Important Issues in SMA Treatment
Dear Members of the SMA Community, For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, […]
Cure SMA Statement on Tax Reform Bill and the Repeal of the Individual Mandate
On Wednesday, Congress passed the most sweeping tax bill in a generation. Cure SMA has been monitoring and advocating on your behalf as this legislation […]
Cure SMA Announces Over $5 Million in New Research and Care Funding
Cure SMA is pleased to announce $5 million in new research funding over the next 12 months. This funding will be used strategically to help […]
2017 SMA Awareness Month Recap
The SMA community celebrated an impactful and advocacy-driven Awareness Month through a number of ways this August. Whether hosting candlelight vigils, meeting with state and […]
SMA Community’s Voice Heard “Loud and Clear” at Last Week’s Patient Focused Drug Development Meeting with the FDA
On April 18, 2017, the SMA community—families, clinicians, researchers, industry and regulators—gathered for a Patient-Focused Drug Development (PFDD) Meeting with the FDA. As part of […]
Cure SMA Receives Generous Donations from Fighting for Kaiden Foundation
Cure SMA would like to thank the Fighting for Kaiden Foundation for their generous donations to our equipment pool and research programs. The foundation’s generosity […]
Cure SMA Releases Care Series Booklet on Insurance
Cure SMA is excited to announce the launch of our newest care series booklet, Choice and Connection to Care: A Health Insurance Roadmap for People […]
Cure SMA Launches Community Survey to Address Urgent and Important Issues in SMA Treatment
For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes and challenges. We know that the […]
Ionis Pharmaceuticals Issues Community Statement on the Approval of Spinraza
Ionis Pharmaceuticals has issued the following community statement on the approval of Spinraza for SMA: Dear Members of the SMA Community, Today is a historic […]