The Cute Sydnrome Foundation is thrilled to announce that starting on September 30th we will be holding a five-week Clinical Trial Readiness Educational series for the SCN8A community. Take a look at the topics we have planned below:
TCSF believes that one of the most important things we can do to help prepare our community for any and all clinical trials focused on the SCN8A community is to help ensure that our families are informed on how clinical trials work—as well as on general drug development, the ethics of patient data collection, and the variety of potential future therapies. This Clinical Trial Readiness Series will bring together panels of industry professionals, clinician researchers, and other rare epilepsy advocates to discuss these important details.
We are grateful to our generous sponsors, including Neurocrine Biosciences and Zogenix, for helping to make this important series possible!
In our first series event we welcome writer, advocate, photographer, and mother Rachel Callender to lead a workshop focused on the language we use to talk about our children. In this workshop we will connect around the idea that we need to be able to both talk about our children in terminology that allows us to help them (the language of science, medicine, development), but also in ways that allows us to celebrate them for exactly the extraordinary people they are, right at this moment. As we look with hope toward new therapies in our future, we also need to pause and remember the beauty at the center of that hope: Our children.
Take a moment to watch Rachel's message to the SCN8A community: