Decoding Dravet
Decoding Dravet – Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation.
My name is Mary Anne Meskis. I am the Executive Director of the Dravet Syndrome Foundation and I have an adult son with Dravet syndrome. My blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
Guest Blog: 24 Hours in the COVID-19 Ward with Marie
This week’s guest blog post comes from Yssa DeWoody, PhD. Yssa is the Cofounder and Director of Ring14 USA, a non-profit focused on improving the lives of those affected by rare genetic disorders of the 14th chromosome, in particular [...]
Remembering Charlotte
Our community is mourning the loss of a special little girl, Charlotte Figi, who had Dravet syndrome and became the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so [...]
DSF Virtual Meet-Ups
Social distancing will mean we will be staying further apart from one another physically in the coming weeks. Our team and community were disappointed by the postponement of our 2020 Conference, as well as our fundraising events through the [...]
Welcome to Our New Board Members
Please join us in welcoming our two newest board members, Ashley Kerns and Dr. Joseph Sullivan, who will officially begin their terms on April 1, 2020. Ashley resides in Westlake, Louisiana with her three children, Michael, age 9, and [...]
How can DSF help during these uncertain times?
This was a difficult blog post for me to sit down and write because my heart has been so heavy for our Dravet community and the world at large. We are essentially at war, against an invisible enemy. The [...]
Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community
Original Post: March 13, 2020 Updated: April 9, 2020 Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. [...]