Community Spotlight

By |2021-06-30T13:06:21-05:00June 30th, 2021|Categories: Our Community|

Remembering those we have lost In this Community Spotlight we honor those that we have lost to Dravet syndrome. Evan Nicholas Bartley Zackary Blake Bell Tanner Berry Gabrielle Alexis Berryman Ella Elizabeth Brearley Megan Alexandra Buss Dawson Luke Causey Bethany Childers Yotom Cohen Scott C. Crossland Clover Dohman Tyler Francis Eimont Charlotte [...]

Community Spotlight

By |2021-06-30T13:06:12-05:00June 30th, 2021|Categories: Our Community|

Meet our Dravet Warriors! In this Community Spotlight meet our Dravet Warriors! Our Dravet Stores page is such an integral part of our website. It is a place to direct family and friends to learn more about our children and their journey along with Dravet syndrome itself.  However, it also serves as a [...]

Community Spotlight

By |2021-06-30T12:36:02-05:00June 30th, 2021|Categories: Our Community|

Meet Tiffany! In this Community Spotlight meet Tiffany Rowan. Tiffany’s daughter, Laney, had her first seizure at 4 months old and was diagnosed with Dravet syndrome at 6 months old. Tiffany struggled with having to administer multiple medications several times a day to her infant daughter. Between not being able to open capsule [...]

Community Spotlight

By |2021-06-30T11:51:19-05:00June 30th, 2021|Categories: Our Community|

Meet the Jacobs Family! In this Community Spotlight meet the Jacobs Family. This family works tirelessly to advocate for their son Dominic and the entire Dravet community by hosting awareness tables at local events. For Dravet Awareness month, they ran a lemonade stand and raised over $1200 and counting for DSF! We are [...]

Community Spotlight

By |2021-06-30T11:52:04-05:00June 30th, 2021|Categories: Our Community|

Meet Elizabeth and Madison! In this Community Spotlight meet Elizabeth and her twin sister, Madison. Elizabeth wrote us this really sweet letter and we just had to share it with our community! To begin, I would like to thank you for all the hard work you do. From holding conventions to zoom meetings, [...]

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

By |2021-06-12T13:15:14-05:00June 25th, 2021|Categories: Decoding Dravet Blog|

It is difficult to truly gauge both the financial costs and the significant humanistic toll of caring for someone with Dravet syndrome. Prolonged or repetitive seizures diminish quality of life not only for patients, but also for parents and caregivers, who may suffer loss of time from work, loss of employment, increased anxiety, and social [...]

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 [...]

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