DSF Parent Ambassadors

Erin Frost Erin lives in Apex, North Carolina with her husband, Justin and their daughters, Mia (16) and Hannah (14). Mia started having seizures at 3 months old. Genetic testing was done when she was about 2.5 years old and she was diagnosed with the SCN1A gene mutation. It took a few years to get […]

Brenda Ferrell is mom to 32-year-old Brian, who lives in an apartment with 24/7 caregivers. In her former life, Brenda taught college French and graduate classes in teaching English as a 2nd language. She retired in 2000 to be a full time mom. She taught French at Brian’s primary school and became involved in Boy

Allen, originally from the Chicago area, resided in six different states for over 25 years before settling in Central Florida with his two daughters. His involvement in Dravet Syndrome advocacy began when his younger daughter, Abigaile, experienced her first seizure at five months old. The family spent years pursuing an accurate diagnosis, ultimately identifying Dravet

Siobhan Grevelding – NY Siobhan is a dedicated caregiver to her youngest son, Lennox, who was diagnosed with Dravet syndrome in June 2021 at just one year old. Residing in Syracuse, New York, Siobhan is part of a large blended family of seven.  Siobhan made the difficult decision to leave her full-time position in the

Aleksi Ilmonen  Aleksi Ilmonen is originally from Finland and now lives in New Jersey with his wife Xian and two sons, Emil, 7, and Erik, 10, who has Dravet’s syndrome. Aleksi has a master’s degree in marketing and worked as a strategic planner in advertising agencies for 10 years. Currently, he is concentrating on being

Austin’s son, Owen, was diagnosed with Dravet syndrome in November of 2014 at the age of 13 months. In the spring of 2015, she and her family attended an epilepsy conference in California. There they met Dr. Charlotte Dravet and veteran Dravet families. The love and advice the Watsons received from those families forged deep

Richard was born, raised, and currently resides in Enumclaw, WA.  He has spent most of his career working in a local manufacturing plant programming welding robots and as an IT Analyst.  He is married and has two boys, Owen and Zachary.  Richard now spends most of his time troubleshooting and repairing off-road vehicles and buggies. 

Colleen and her husband, David, live in Madison, Wisconsin and are proud parents to three adult children, one of whom lives with Dravet syndrome. Colleen’s education is in journalism and marketing. In her early career, she worked at public relations agencies in Minneapolis and Madison and had a small consulting firm. A consummate Jane-of-all-trades, her

Tina’s son Ryan was diagnosed with Dravet Syndrome at the age of six but had been having seizures from nine weeks old. It took 3 different Neurologists to figure it out. Tina has shared and will continue to share her story and that is why she became an Ambassador for the Midwest Region. Unfortunately, Ryan