Financial Statements & Annual Reports

Cure SMA is a 501(c)(3) organization, federal ID 36-3320440.

Our Commitment to Donors

  • We are committed to using your donation in the most efficient and effective manner, so you can be confident you are helping speed the path to a treatment and cure for SMA, and supporting families today.
  • We are committed to the highest standards of financial accountability and transparency.
  • We are a 501(c)(3) and all contributions are tax-deductible to the fullest extent allowed by law.
  • We are committed to safeguarding your privacy.

What Your Donation Supports

Cure SMA is leading the way to a world without SMA. These are just a few of the milestones we've achieved—thanks to your support—and a few of the goals we are currently working toward.

Cure SMA is vital to advancing research.

  • Since 1984, we’ve led and invested in the research that has made today’s breakthroughs possible. With deep connections and expertise in both the patient and research communities, we’re uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible.
  • We have invested more than $62 million in research and have funded half of all the ongoing new drug programs for SMA.
  • We now have 14 companies involved in SMA research, including some of the biggest pharmaceutical companies in the world.

We’re making real progress toward a cure. 

  • There’s great reason for hope. Thanks to the dedication of our community and the ingenuity of our researchers, we now have the first-ever approved treatment that targets the underlying genetics of SMA. But our work is not done. We know what we need to do to develop and deliver effective therapies. And we’re on the verge of further breakthroughs that will continue to change the course of SMA for everyone affected—from infants to adults—and eventually lead to a cure.
  • On December 23, 2016, the FDA announced that it had approved Spinraza, a treatment developed by Biogen and Ionis, making it the first-ever approved therapy for SMA. Cure SMA provided the very first research funding for this program beginning in 2003.
  • Today, we have one approved therapy, and 17 drug programs in development, including five in clinical trials.
  • We won’t stop working toward a world without SMA, but until we have a treatment and cure, we’ll do everything we can to improve quality of life for children and families affected by the disease today. In the last year, Cure SMA provided direct services to over 3,600 families.

Financial Documents

IRS 990 Forms

For Further Information

To receive a copy of our audited financial statements, or to request a copy of our upcoming annual report, please email us at

Cure SMA was founded in 1984 by a small group of families affected by SMA. From 1984 until 2014, Cure SMA was known as Families of SMA.

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