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FDA Issues Safety Warning Regarding Neck Float Devices for Babies
On June 28,2022, the U.S. Food and Drug Administration (FDA) issued a safety communication about using neck float with babies. This occurs when a serious […]
Read More ›Cure SMA Publishes Results from Survey Measuring Disease Burden in Adolescents and Young Adults
As treatment options increase for adolescents and young adults living with SMA, we need tools to measure the effectiveness of these treatments from the patient’s […]
Read More ›Cure SMA Publishes Research Exploring What Is Important to SMA Clinical Trial Participants
The recent availability of new treatments for SMA would not have been possible without the participation of SMA-affected individuals in clinical trials. Yet participating in […]
Read More ›Financial Planning with a Disability
When you first learned that you or your child had SMA, you probably began analyzing your home life, your or your child’s education, and other […]
Read More ›Community Spotlight: Nikki McIntosh
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 […]
Read More ›Community Spotlight: Scurria Family
John and Krista Scurria, of Baton Rouge, La., believe in a parent’s intuition. Krista first became worried about the development of her oldest child, Josh, […]
Read More ›2019 SMA Researcher Meeting Summary: Clinical Drug Development
The annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year, we had a record setting 735 […]
Read More ›What to Expect in a Clinical Trial
Clinical trials for spinal muscular atrophy (SMA) help researchers answer important questions about the disease and investigational drugs, providing information that may help the development […]
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 $5.05 Million in Research Funding for FY18
Over the past fiscal year—from July 1, 2016, to June 30, 2017—Cure SMA has funded over $2.5 million in new research funding. This funding will […]
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