Impact Report 2022

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 the last year.



  • Eight additional states started screening for SMA, with 98% of all U.S. newborns now being screened for SMA in 2022
  • 1,006 advocacy messages were sent to Congress during the Cure SMA 2022 Conference, making it the largest federal online advocacy campaign in the history of Cure SMA


  • Cure SMA solely supported the Pediatric Neuromuscular Clinical Research Network (PNCRN) of highly skilled clinical trial professionals
  • Relaunched our basic research funding, now focused on developing additional treatments that will target different areas of the body to help bring back strength and function

Community Support

  • Informational packets sent – 1,238
  • Pieces of equipment sent from our equipment pool – 213
  • Newly diagnosed care packages sent – 226
  • Teen and adult support packages sent – 525
  • Total 2022 Annual Conference Attendees – 2,057

Clinical Care

  • The Cure SMA Care Center Network added ten new sites (29 total)
  • Over 750+ SMA patients participate in the SMA Clinical Data Registry, including both children and adults with SMA
  • Over 300 Adult & Pediatric SMA physicians, researchers, clinical staff, and neuromuscular program coordinators worked collaboratively to better understand and improve standards of care for patients with SMA


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

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