DSF Parent Ambassadors

Brian Wilson – Colorado Brian, a software sales director, originally from New Jersey, has been living in Colorado with his family since 2014. In 2011, Brian and his wife, Meghan, welcomed their second child, Vivian, to the family. Two months later, Vivian had her first seizure, and the journey began. Vivian has an amazing Dravet […]

Sarah Reyes – Texas Sarah Reyes lives in Allen, Texas with her family. Sarah lives with her husband, Marcus, and her three children. She is passionate about making a difference in the lives of those who are affected by Dravet Syndrome due to her own challenges with having a 9-year-old daughter with Dravet Syndrome  Sarah

Brenda Tisdale – Illinois  Brenda lives in Homewood,IL with her husband Mark and daughter Addison. Addison, now 12, was diagnosed with Dravet Syndrome when she was two and a half years old. Brenda is a stay at home mom who also has a side business that was started after Addison’s diagnosis. Addison’s Tutu Bowtique began

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 – TN Dr. Brenda Y. Ferrell is a retired University French professor and mother to her 30-year old Dravet son, Brian. She became involved with the IDEA League after a visit with Dr. Olivier Dulac in Paris, France, when Brian was one-year old, in 1994. At that time he was diagnosed with SMEI,

Allen Golec – Florida Allen is a native of the Chicago area, has resided in six different states over a 25-year period, a journey that eventually led him to establish roots in Central Florida alongside his two daughters. The younger of the two, Abigaile, had her first seizure at 5 months old and was diagnosed

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 (Northeast region) Aleksi Ilmonen is originally from Finland, then lived in Sweden and now resides in Basking Ridge, New Jersey with his wife Xian and two sons Emil, 5 and Erik, 8 who has Dravet’s syndrome.  Aleksi has a masters degree in marketing and worked as an Strategic Planner in advertising agencies for

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