Our History
Cure SMA was founded in 1984 to support the SMA community and fund research to find a cure. In our 40-year history, we've seen great breakthroughs that have changed the trajectory of SMA, and have undergone many changes, all leading us to the present.
Our History
In 1984, Families of Spinal Muscular Atrophy (FSMA) was founded as a volunteer organization dedicated to funding and promoting research into the causes and cure of spinal muscular atrophy. Our founders, a small group of parents across the U.S., banded together to support and educate each other about the devastating disease affecting their children.
Empowered to understand the genetics and cause of SMA, Families of Spinal Muscular Atrophy created a Scientific Advisory Board and Medical Advisory Council in 1986, compiled of medical and scientific experts. FSMA’s commitment to bring researchers and clinicians into the SMA community created a legacy of unparalleled research progress and patient support, from grassroots fundraising to global scientific leadership.
Families of SMA, now Cure SMA, has continued to grow from a courageous group of families to an internationally respected network of research, fundraising, and support, including 37 volunteer Chapters throughout the United States.
Over the past 40 years – thanks to individuals, families, scientists, and supporters – we've achieved remarkable milestones. We have propelled groundbreaking research leading to the development of three FDA-approved treatments for SMA. These treatments have transformed lives, instilling hope where there was once uncertainty.
With each milestone and every dollar raised, we are propelling ourselves closer to a future where SMA is no longer a burden that families bear. Together, we've demonstrated time and again that our determination as a community can drive change.
Milestones:
1984:
- Incorporation of Families of Spinal Muscular Atrophy (FSMA); first issue of Directions is published.
1986:
- Scientific Advisory Board and Medical Advisory Council formed by FSMA, comprised of prominent neurologists, geneticists, and clinicians.
1989:
- The first family conference hosted by FSMA in Illinois.
1990:
- SMA chromosomes are located by Dr. Conrad Gilliam at Columbia University.
1991-1993:
- FSMA funds three full-time researchers at Columbia University and the Ohio State University.
1995:
- SMA gene identified by Dr. Judith Melki in France.
1996:
- Discovery of the SMA protein, SMN, and development of carrier testing at the Ohio State University. Both projects are funded by FSMA.
- August is officially recognized as SMA Awareness Month.
- First-ever website for Families of Spinal Muscular Atrophy (FSMA) is created.
1997:
- FSMA initiates and sponsors the First Annual SMA Research Group Meeting
- FSMA provides the first year of funding to a 3-year gene therapy study at Ohio State University, led by Dr. Arthur Burghes.
1999:
- The office of FSMA opens in Libertyville, IL.
- SMA is one of 14 diseases listed in the appropriations bill for funding by the National Institute of Health.
2000:
- First-ever SMA drug development program started.
2002:
- The largest SMA drug screening program is completed, and FSMA begins funding the development of clinical protocols through Project Cure SMA.
2003:
- More than 150 SMA community members visit 88 congressional offices in support of NIH research funding for SMA, called SMA Day on the Hill.
2005:
- Compass, a publication dedicated to SMA research, is published by FSMA.
2009:
- Orphan Drug Status is awarded by the FDA for SMA therapy.
2011:
- The first clinical trial was initiated for an SMA-specific drug.
- The Annual SMA Conference is held at Walt Disney World in Orlando, FL for the first time.
2014:
- The first clinical trial to test gene therapy for SMA begins.
- Families of Spinal Muscular Atrophy is officially renamed as Cure SMA.
2016:
- FDA announces approval of Spinraza to treat SMA, making it the first-ever FDA-approved therapy for SMA, marketed by Biogen.
2018:
- HHS Secretary Alex Azar approves adding SMA to the Recommended Uniform Screening Panel (RUSP), a major step toward implementing newborn screening nationwide.
2019:
- FDA announces the approval of Zolgensma, a gene therapy, for the treatment of children with SMA, marketed by AveXis, a Novartis company.
2020:
- FDA announces the approval of Evrysdi to treat SMA in pediatric and adult patients, marketed by Genenetch, a member of the Roche Group.
2022:
- The Cure SMA Care Center Network comprises 18 hospital sites throughout the U.S.
2024:
- 100 percent of U.S. states are officially screening newborns for SMA, ensuring early diagnosis and treatment for babies born with the disease.
Logos Through The Years:
