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Impact Report 2023

Cure SMA continues to accelerate progress for individuals with spinal muscular atrophy (SMA) through our comprehensive research, advocacy, care, and support programs. Together, we are achieving the next breakthroughs in SMA and building a hopeful tomorrow for future generations. Below are a few highlights and outcomes from 2023. If you would like to know more about your impact, please check out the 2023 Annual Report or connect with us.

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Advocacy

  • Notable advocacy wins were secured, including new SMA research at the National Institute of Health, insurance coverage of seat elevation systems in power wheelchairs, and the implementation of newborn screening in all 50 states!
  • Cure SMA significantly increased advocacy engagement, doubling the number of Cure SMA Advocates and tripling the number of adults with SMA involved in advocacy efforts, with representatives in all 50 states. 
      • 3,470 Congregational messages sent, highlighting 15 different advocacy campaigns.
      • Cure SMA released 300 congressional statements.
      • Advocates connected with 535 members of Congress.
      • Advocates participated in 59 advocacy meetings.
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Research

  • Cure SMA continues to invest in basic research, awarding 5 new basic research grants totaling $575,000 in early 2023, with plans to increase funding to $750,000 for the current grant cycle.
  • The Real World Evidence Collaboration drove improvements to real-world data collection for the SMA community, including conducting a gaps assessment, publishing the 2nd Annual State of SMA report, and refining treatment outcome measures for teens and adults.
  • Cure SMA's Industry Collaboration, involving pharmaceutical and biotechnology companies, published five research articles, hosted an FDA listening session, and collected 699 responses in its 7th Annual Community Update Survey to understand SMA community needs better.
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Community Support

  • 2,410 - support items were distributed from the Cure SMA equipment pool.
  • 204 - newly diagnosed care packages were distributed.
  • 157 - packages were given to adults with SMA.
  • 22 - Summit of Strength local events held Nationwide.
  • 3,200 - Families, Individuals with SMA, and Researchers attended the Annual SMA Conference – the largest SMA conference in the world! 
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Clinical Care

  • The Cure SMA Care Center Network, comprised of 29 centers across 22 states, provides geographically diverse care for individuals with SMA, with nearly half of the centers serving both pediatric and adult patients.
  • The SMA Clinical Data Registry (CDR) collected data from over 1,000 participants, sourced from electronic medical records, to drive improvements in healthcare for people with SMA and establish standard care guidelines.

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Donate by Mail: Cure SMA, 925 Busse Road, Elk Grove Village, IL 60007

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