In 2025, DSF launched a new program with the hope of connecting parents in a fresh and creative way: the Community Book Club. This virtual club invites parents to join in a shared experience—reading a book and then coming together in real time to talk about it. And now, we are excited to launch the […]
2026 Community Book Club for Dravet Parents Read More »
For several years, one of DSF’s programs has been our Family Network Ambassador (FNA) Program. This program is made up of veteran Dravet parents who come together to support our foundational mission: To aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected
Stronger Together: Welcome Our 13 Family Network Ambassadors Read More »
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
Grief and Bereavement: Resources and Support from DSF Read More »
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
Help Us Raise Awareness: Become a DSF Brand Ambassador! Read More »
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
DSF Community Book Club Read More »
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
Brian Wilson – CO (Mountain) Read More »
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
Sarah Reyes – TX (Mountain) Read More »
Brenda lives in Homewood, IL with her husband Mark and daughter Addison. Addison, now 14, 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 in 2013 after
Brenda Tisdale – IL Midwest Read More »
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
Erin Frost – NC Southeast Read More »
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
