Community News & Programs

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 Figi Alex Michael […]

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 starting point

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 medications easily

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, your tremendous

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. Tests revealed

#fightdravet June is Dravet Syndrome Awareness month and June 23rd is International Dravet Syndrome Awareness Day. This year, we are recognizing those that we have lost on our first annual Remembrance Day, June 15th. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient

Dravet Remembrance Day Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of Dravet syndrome