Dear friends and family,
You may know that at the end of 2016, the FDA approved the first drug for SMA, Spinraza. I've seen it help many of my friends and acquaintances in the SMA community, and hopefully I will be starting it in the upcoming months! Many other promising treatments are currently in development, and it's truly amazing to see how far we've come in my lifetime. Without your support, none of this would be possible.
Since last year I have been attending UC Davis, and this fall marks the start of my sophomore year! I still don't know what I want to do, but I'm interested in pursuing a math-adjacent career, likely something in the vicinity of statistics and data science. Making the transition to living independently has had its ups and downs, but overall I've found it very rewarding.
Spinal muscular atrophy is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA.
But here’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.
We have chosen Cure SMA because they are uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible. They’ve already invested $70 million in research.
They also provide vital support for families living with SMA, improving their quality of life today. And every year they host the largest SMA conference in the world, bringing families together with the leading SMA researchers.
Making a donation to Cure SMA is easy, secure and completely confidential. Just click on the link and follow the steps!
Thank you again for your personal gift to support our efforts to fund vital research and family support programs for those affected by SMA.