Grief is a complicated, heavy, and big emotion. And it is never so heavy as when someone we love dies. Especially when that death is the death of a child. When a death happens we move into a phase of acute grief – grief that is typically tied to a specific event. When we are […]
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The Dravet Syndrome Foundation (DSF) is excited to open applications for the 2025/2026 Brand Ambassador Program! From May 1 to May 15, individuals from around the world are invited to apply and take part in a mission that is as personal as it is powerful: raising awareness for Dravet syndrome. Currently, there are 10 dedicated
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We are excited to announce that DSF is launching its first Community Book Club and we can’t wait to share this experience with you! The book club will be led by Austin Watson, Family Network Coordinator. She has selected our first read, Microjoys: Finding Hope (Especially) When Life is Not Okay by Cyndie Spiegel. Austin
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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
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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
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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
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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
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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,
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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
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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
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