Biogen Shares Community Statement for SMA Awareness Month
Learn about Biogen’s latest news in SMA by viewing their Community Statement (available as a PDF) and a related video.
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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 injury has been reported while using a device or product. The FDA warns parents, caregivers, and health care providers not to use neck floats with babies for water therapy interventions,
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Community Spotlight: Alexandra and Joe Lakhman
While sibling relationships aren’t always easy, Alexandra ‘Lexi’ Lakhman and her brother Joe have always been close. Despite Lexi being six years older than Joe, she grew up viewing Joe as a role model, particularly for his positive outlook on life. Joe was diagnosed with spinal muscular atrophy (SMA) Type 2 in 2002 when there
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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 perspective. Dr. Chad Heatwole and his team at the University of Rochester have developed the Spinal Muscular Atrophy Health Index (SMA-HI) for this purpose.1 The SMA-HI is an SMA-specific survey
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 clinical trials can be stressful. We at Cure SMA want to understand how future trials can be designed to reduce stress for participants and their parents and caregivers. To achieve
2022 Cure SMA Annual Research Meeting Summaries – Special and Clinical Research Session
In June, SMA researchers and clinicians from around the world met in Anaheim, CA, for the 2022 Annual SMA Research and Clinical Care Meeting. There they shared their most recent data with the goal of accelerating the pace of research into SMA treatments and achieving excellence in SMA clinical care. Below is a summary of
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2022 Cure SMA Annual Research Meeting Summaries – Basic Research Sessions
In June, SMA researchers and clinicians from around the world met in Anaheim, CA, for the 2022 Annual SMA Research and Clinical Care Meeting. There they shared their most recent data with the goal of accelerating the pace of research into SMA treatments and achieving excellence in SMA clinical care. Below is a summary of
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Cure SMA Advocacy Campaign Leads to Congressional Support for More SMA Research
Congress has recognized the unmet and new needs of individuals with SMA by including legislative language in must-pass legislation asking the National Institutes of Health (NIH) to continue research in SMA. At the 2022 Cure SMA conference and throughout the summer, individuals with SMA and their families educated Congress about existing challenges faced by the
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Cure SMA to Hold Patient-Led Listening Session with FDA
On Thursday, August 4, 2022, six members of the SMA community will have the opportunity to talk directly with the U.S. Food and Drug Administration (FDA) about their lived experiences with SMA and their unmet medical needs. This Patient-Led Listening Session will be a small, private teleconference attended by patient advocates, FDA representatives from the
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Shop New Cure Merch at Our Updated Online Store
Cure SMA is pleased to announce the launch of our newly updated merch store! The merch store features all the most popular Cure SMA t-shirts, hats, zip-up jackets, and more, as well as new items, which include: Black Performance Full-Zip Fleece Bucket Hat Women’s White Reflective Performance Half Zip Women’s Performance Racerback Tank In addition
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