DSF is looking for Board Members!

By |2021-06-17T12:48:20-05:00June 18th, 2021|Categories: Decoding Dravet Blog|

Are you looking for a way to truly have an impact on the future of Dravet syndrome? DSF is currently seeking professional, committed individuals who are passionate about finding a cure for Dravet syndrome for their Board of Directors. Board positions are a voluntary, three-year term that can be served from anywhere in the United [...]

Community Spotlight

By |2021-06-17T10:41:39-05:00June 17th, 2021|Categories: Our Community|

Meet Nathan! In this Community Spotlight meet Nathan Blatt. On May 23rd, Nathan competed in the Ironman 70.3 Chattanooga in honor of his sons, Cooper and Colton. After receiving a diagnosis of Dravet syndrome when Cooper was 1 ½ years old, Nathan and his wife, Whitney, were also tested for the genetic mutation. [...]

Educational Webinar Series

By |2021-06-17T11:21:18-05:00June 17th, 2021|Categories: DSF Programs|

Caring for a loved one with Dravet syndrome or another DEE Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All Don’t miss, Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the [...]

Call for Research Proposals

By |2021-06-17T11:20:04-05:00June 17th, 2021|Categories: Research / Treatments|

Applications Due September 10, 2021 The 2021 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 [...]

An Update On Our Staff

By |2021-06-17T10:48:30-05:00June 17th, 2021|Categories: Our Community|

Thank You Wendy! Please join us in thanking Wendy Fry for her role as Director of Family and Caregiver Engagement for DSF. Wendy recently made the very difficult decision to step down from her role to focus on her family. Wendy is a former elementary school teacher living just north of Philadelphia, PA [...]

Follow Dan

By |2021-06-11T14:46:33-05:00June 11th, 2021|Categories: Uncategorized|

        #MilesforMcCall #RaceAcrossAmerica #CyclingforaCure #RideforResearchDravet #RidesforResearch

Qualifying Race Calendar

By |2021-06-11T14:39:05-05:00June 11th, 2021|Categories: Uncategorized|

October 2021:  24 Hour World Time Trial Championship in Borrego Springs, CA March 2022:  Longhorn 500 in Castroville, TX July 2022:  Race Across Oregon 500 Mile Championship in Oregon September 2022:  Silver State 508 in Nevada Spring 2023:  TBD June 2023:  Race Across the West (RAW) Oceanside, CA to Durango, CO (930 Miles) Fall 2023:  TBD Spring 2024:  TBD June 2024:  Race Across America (RAAM) 3,100 Miles [...]

What is RAAM?

By |2021-06-11T14:31:26-05:00June 11th, 2021|Categories: Uncategorized|

Race Across America (RAAM) is one of the most respected and longest running ultra-endurance events in the world. RAAM is seen as a pinnacle of athletic achievement not only in cycling circles but the greater sporting community as well. In 1982, four individuals raced from the Santa Monica Pier in Los Angeles to the Empire [...]

Join us at our Dravet Discussion Lounges at this Year’s Conference!

By |2021-06-18T10:53:54-05:00June 11th, 2021|Categories: Decoding Dravet Blog|

With our conference in a virtual format this year, we wanted to find a creative way to see and chat with one another until we can meet again in person next year. We will be hosting our Dravet Discussion Lounges from 7-9pm ET on Friday, June 25th and Saturday, June 26th, for all registered conference [...]

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