Search Results: Living with SMA issues
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 […]
Read More ›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 […]
Read More ›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 […]
Read More ›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 […]
Read More ›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 […]
Read More ›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 […]
Read More ›Cure SMA Participates in a Special FDA Listening Session
Last week, Cure SMA participated in a listening session with FDA Commissioner Robert M. Califf, MD, MACC. The FDA organized the listening session in order […]
Read More ›Jadon’s Hope Foundation Donates 15 Items to Cure SMA Equipment Pool
Cure SMA recently recieved a donation of nine special tomato feeder seats and six telescopic ramps from Jadon’s Hope Foundation. The feeder seats and ramps were […]
Read More ›Cure SMA-Funded Researcher, Chad Heatwole, Publishes Paper on Clinical Trial Outcomes in Adults with SMA
Cure SMA-funded researcher, Chad Heatwole, and his team, have published a paper, “What Matters Most: A Perspective From Adult Spinal Muscular Atrophy Patients”. This project […]
Read More ›2016 SMA Researcher Meeting Summary: The Changing Landscape of SMA
The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 350 attendees. […]
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