Search Results: Living with SMA issues
Cure SMA Advocates for SMA Community at ICER Hearing
On Thursday, March 7, Cure SMA testified on behalf of the SMA community at a meeting of the Institute for Clinical and Economic Review (ICER). […]
Read More ›Biogen Issues Q4 Community Statement on Spinraza
Bigoen has provided the below community statement on Spinraza. Dear Members of the SMA community, As we approach the two-year anniversary of the U.S. Food […]
Read More ›Cure SMA Receives Generous Funding from Luke 18:1 Foundation
Cure SMA would like to thank the Luke 18:1 Foundation for their generous donations to our equipment pool and research programs. The foundation’s generosity will […]
Read More ›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, […]
Read More ›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, […]
Read More ›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 […]
Read More ›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 […]
Read More ›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 […]
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