Meet Dan Hartley, his daughter Bri, and McCall! In this Community Spotlight meet Dan Hartley and learn about his new multi-year fundrasising and awareness event – Miles for McCall! Dan Hartley is a 49-year-old, US Navy Veteran and business owner, who is a former semi-professional ultra-runner who has competed in numerous ultramarathons and 100-mile [...]
DSF is looking for new board members! 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 [...]
Meet Sarah and Avery! In this Community Spotlight meet Sarah Lango and her daughter Avery. For Dravet Awareness month, Sarah reached out to several local businesses in her small town to raise awareness for Dravet syndrome and Avery’s journey. Each business handed out brochures and postcards. In many cases, businesses donated a portion [...]
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 [...]
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 [...]
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 [...]
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 [...]
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, [...]
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. [...]
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 [...]
