Decoding Dravet Blog2020-04-06T16:47:34-05:00

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.

8April, 2020

Remembering Charlotte

By |April 8th, 2020|

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 [...]

3April, 2020

DSF Virtual Meet-Ups

By |April 3rd, 2020|

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 [...]

13March, 2020

Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community

By |March 13th, 2020|

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. [...]