We are excited to announce that Families of SMA is now Cure SMA. In addition to this name change, we’ll also be making a number of other improvements to the way we communicate, starting with a new look and this new website.
In 1984, a small group of families joined together so they could fund research toward a treatment and cure for SMA, and find new ways to support each other.
In the last 30 years, that small group has grown to a community of over 110,000 members and supporters. In those 30 years, we’ve funded $57 million in SMA research. Each year, we reach thousands of families through our newly diagnosed care packages, care series booklets, equipment pool, and other family support services. And our Annual SMA Conference is the largest SMA conference in the world.
Perhaps most importantly, we’ve made tremendous progress in research. Today there are more clinical trials and more paths to a treatment than ever before.
This is a time of great progress and promise for our community—thanks to the passion and support of our volunteer chapters and member families. And in order to continue growing, we need to speak clearly to a wider audience. That’s our primary goal in making these changes—to attract even more people to be a part of our work so that we can accelerate momentum toward a treatment and cure.
We are also committed to making it easier for our community to find information and connect with each other, and for all of our fundraisers to plan and host successful events. To that end, we have made significant improvements to our website and database, based largely on your feedback and ideas.
Be assured that our primary mission remains unchanged. We are as dedicated to funding new research breakthroughs, and to providing the compassionate, knowledgeable support that our families have come to rely on, as we have always been.
“Cure SMA” is our vision, and it’s also our rallying cry—it’s why we keep funding research and raising awareness. We’re confident that we can and will achieve that promise, and we’re proud to have it as our name.
If you have any questions on Cure SMA, please reach out to Kenneth Hobby, president, at [email protected]. Or, feel free to reach out to any staff or board members. We’d love to chat with you about what’s next for us.
Kenneth Hobby, president
Rich Rubenstein, chair of the board of directors