Call for Research Proposals!

By |2020-05-14T12:07:09-05:00May 15th, 2020|Categories: Decoding Dravet Blog|

The 2020 DSF Research Grant Program is open! Our Research Grant Program was established in 2010 to support investigator sponsored research in the field of Dravet syndrome, which historically has been critically underfunded. Our goal is to support and promote innovative approaches in Dravet syndrome research across disciplines to meet the critically important needs in [...]

Guest Blog: 24 Hours in the COVID-19 Ward with Marie

By |2020-04-08T10:32:34-05:00April 17th, 2020|Categories: Decoding Dravet Blog|

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 Ring14 syndrome, through research, advocacy, and community support. She also serves as the President of Ring14 [...]

Remembering Charlotte

By |2020-04-08T16:21:22-05:00April 8th, 2020|Categories: Decoding Dravet Blog|

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 many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels like [...]

DSF Virtual Meet-Ups

By |2020-04-16T16:54:31-05:00April 3rd, 2020|Categories: Decoding Dravet Blog|

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 end of June. As a Dravet parent, I recognize the importance of these DSF events for [...]

Welcome to Our New Board Members

By |2020-03-24T22:13:55-05:00March 27th, 2020|Categories: Decoding Dravet Blog|

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 Samuel, age 6, and Katie, age 1. Katie was diagnosed with Dravet syndrome at six months [...]