My Nonprofit Reviews

The DSF is an awesome nonprofit that provides support for families and promotes fundraising for research for a cure.

The Dravet SYNDROME FOUNDATION has been a godsend to me and my son. Because of their efforts, three of the medicines that Brian takes have been approved by the FDA and made available here in the USA. His seizures are well-controlled. I have received so much support from the DSF through the on-line parent support groups, and the events that they sponsor. My son and I have both been recipients of patient support assistance grants. I don't know what families of those with Dravet Syndrome would do without this wonderful organization

The Dravet Syndrome Foundation (DSF) has helped me and my son and many others like us in so many ways. In 2019 we were fortunate to receive a Patient Assistance Grant (PAG) that allowed by son, Brian, to get an iPAD that will help him with reading, math, & logic skills and in so many other ways. He LOVES his iPAD and has learned to navigate the educational games on it by himself. In addition to the PAG, the DSF provides support to our community, education to the DS community, as well as to medical professionals, and funds research into understanding DS and finding a cure for DS. The DSF has helped to get FDA approval of new drugs for DS. Just this week, the executive director wrote a letter for me to use in my third stage Medicare appeal before an Administrative Law Judge, in order for me to try to get Medicare to cover the cost of DIACOMIT, a recently FDA approved drug for DS. The drug is so new to the USA, that it is not yet on the Medicare formulary. I don't know what I would do without the DSF. It's a wonderful organization.