2020 DSF Conference Registration is Now Open!

By |2020-01-15T19:57:31-05:00January 17th, 2020|Categories: Decoding Dravet Blog|

Registration for the 4th biennial DSF Family & Professional Conference is open! We are excited to be partnering with Cook Children’s Medical Center in Fort Worth, Texas, and Dr. Scott Perry on this educational and inspiring event which will take place from June 18-20, 2020. It is designed to unite all groups committed to [...]

DSF is Hiring a Research Coordinator

By |2020-01-15T08:30:06-05:00January 3rd, 2020|Categories: Decoding Dravet Blog|

We're Hiring a Research Coordinator! Are you a scientist who absolutely loves the work that Dravet Syndrome Foundation (DSF) does, but is looking for a change from the lab environment? We have just the opportunity for you! We’re looking for a community-oriented scientist to direct DSF’s research efforts. DSF is inviting applications for a Research [...]

What is the AES meeting, and why is there so much focus on it?

By |2019-12-18T23:05:31-05:00December 27th, 2019|Categories: Decoding Dravet Blog|

Special thanks to DSF Board President and Scientific Director, Nicole Villas, for sharing her perspective on the 2019 AES Meeting. _____________________________________________________________________________________________________________ The Dravet Syndrome Foundation´s 5 staff and 6 board members attended the American Epilepsy Society´s (AES) annual meeting in Baltimore, Maryland, from Dec. 5-9, 2019. As you read our newsletter and social media [...]

2019 American Epilepsy Society Meeting Recap

By |2019-12-18T22:43:38-05:00December 20th, 2019|Categories: Decoding Dravet Blog|

Each December, the American Epilepsy Society (AES) meeting takes place in the U.S. As the largest gathering on epilepsy in the world, the AES Meeting is the event for epilepsy professionals in academia, clinical practice, industry, and advocacy.   This was my 14th AES meeting, and I have had the unique opportunity to watch momentum [...]

DSF Research Roundtable – 10th Anniversary!

By |2019-12-12T14:31:28-05:00December 13th, 2019|Categories: Decoding Dravet Blog|

Special thanks to DSF Board President and Scientific Director, Nicole Villas, for sharing an overview of the 2019 DSF Research Roundtable in this week's blog post. We are excited to be able to share the impact of our community's ongoing support! _____________________________________________________________________________________________________________ The Dravet Syndrome Foundation was honored to host our 10th annual Research [...]

2019 DSF Grant Awardees

By |2019-12-02T22:14:58-05:00December 6th, 2019|Categories: Decoding Dravet Blog|

DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We places a high priority on funding research that has a clear path to [...]

2019 DSF Annual Campaign

By |2019-11-29T17:20:03-05:00November 29th, 2019|Categories: Decoding Dravet Blog|

We Need You! Every day for more than 10 years, Dravet Syndrome Foundation (DSF) has been relentless in funding research, organizing our community, and helping to make advancements in the field of Dravet syndrome and other rare epilepsies. At the end of 2018, we saw two new FDA-approved medications come to market with an [...]

Giving Thanks for Our Community

By |2019-11-20T15:42:26-05:00November 22nd, 2019|Categories: Decoding Dravet Blog|

You face a lot of difficult days when you are living with Dravet syndrome. As our Family & Caregiver Engagement Director, Wendy Fry, often says, Living with Dravet, we have high highs and low lows. Our families live in a constant state of flux and never know what is going to be happening with [...]

Update on DSF Caregiver Burden Video Series

By |2019-11-13T09:07:08-05:00November 15th, 2019|Categories: Decoding Dravet Blog|

This week, I wanted to share an update on an exciting new project we are working on and to introduce you to the great partners we are working with to development this useful tool for our community. Earlier this year we were excited to receive an unrestricted grant from Greenwich Biosciences to start the [...]