Protected: 2025 Hope on the Hill Celebrates Day of Advocacy in Washington, DC
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SMA Researchers and Clinicians from Around the World Gather at the 29th Annual SMA Research & Clinical Care Meeting (2 of 2)
At the end of June, SMA researchers and clinicians from around the world gathered in Anaheim, California, for the 29th Annual SMA Research & Clinical Care Meeting. Their common goals were to accelerate the pace of research into SMA treatments and to achieve excellence in SMA clinical care. The annual meeting provides an opportunity for
SMA Researchers and Clinicians from Around the World Gather at the 29th Annual SMA Research & Clinical Care Meeting (1 of 2)
At the end of June, SMA researchers and clinicians from around the world gathered in Anaheim, California, for the 29th Annual SMA Research & Clinical Care Meeting. Their common goals were to accelerate the pace of research into SMA treatments and to achieve excellence in SMA clinical care. The annual meeting provides an opportunity for
Cure SMA Shares Patient Voice and Needs with FDA
One of Cure SMA’s top priorities is to relay the SMA community’s experiences, preferences, and unmet needs to the United States Food and Drug Administration (FDA). This enables the FDA to make patient-centered decisions about new SMA drugs. This is a critical time for patient input on SMA treatment, as new therapies and variations
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Cure SMA Educates Insurers on Unmet Needs and Access Barriers of the SMA Community
Cure SMA completed a year-long advocacy effort to educate public and private insurers about the current state of spinal muscular atrophy (SMA), including the unmet needs of individuals with SMA and barriers they face in accessing essential healthcare and treatments. Patient and clinical-reported data have chronicled how SMA is rapidly changing due to the
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Key Congressional Committee Recommends New Federal Research in SMA
A key congressional committee approved fiscal year 2026 legislation that now prioritizes new federal research funding for spinal muscular atrophy (SMA). The U.S. Senate Appropriations Committee recognized the unmet medical needs of individuals with SMA, including those from military and veteran families, by this year adding “spinal muscular atrophy” within a biomedical research program managed
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This August is Spinal Muscular Atrophy (SMA) Awareness Month!
Whether you live with SMA, know someone who does, work in research or care, or are beginning your journey with the community—SMA Awareness Month is a time to come together to celebrate progress, honor experiences, reflect on challenges, and build momentum for the future. The theme of SMA awareness month, “Breakthroughs Begin with You,” puts
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Thank You for an Amazing 2025 Annual SMA Conference!
Thank you to everyone who attended the 2025 Annual SMA Conference at the Disneyland Hotel in Anaheim, California! It was an impactful weekend of opportunities to connect, learn, and have fun. We’re thrilled to share that nearly 2,800 attendees joined us – our second-largest conference to date! It was an honor to have individuals with
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The Future of Accessible Air Travel and Current Challenges for the SMA Community at Cure SMA’s 2025 Annual Conference
At this year’s Annual Cure SMA Conference in Anaheim, California, more than 2,800 attendees from across the country came together to learn, connect, and imagine a better future—including a future where air travel is safe, accessible, and dignified for all wheelchair users. While progress is being made, many individuals and families in the SMA community
Cure SMA Awards $140,000 Grant to Mandana Arbab, PhD, at Boston Children’s Hospital
Each year, Cure SMA invites scientists from around the world to submit funding proposals for basic research projects that address specific unanswered questions in SMA biology. Our Scientific Advisory Board then ranks the submitted proposals on both their scientific merit and relevance to Cure SMA’s research priorities. Funding is awarded to the highest ranked projects.
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