Since joining the Dravet Syndrome Foundation staff in late 2022, I have had the privilege of meeting so many families who are all desperate for the same thing: a cure! As a Dravet mom myself, I share in those sentiments. Ever since my daughter, Eden, had her first seizure in 2014 I have been desperate for better treatment options and a better quality of life for her. Now, 9 years later, though I am encouraged by the progress that has been made; I am still eager to continue to do all that I can to push forward the mission of DSF- to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
One way to support that mission, is by participating in the #curedravet T-shirt campaign that we are hosting in support of Epilepsy Awareness Month. Each November we have the opportunity to raise awareness for all epileptic conditions including Dravet syndrome. Don’t underestimate the impact that a simple T-shirt can have.
I was recently in a waiting room at a doctor’s office when a woman approached me and proceeded to tell me that she saw my Dravet syndrome shirt and while sitting there, she visited DSF’s website and was encouraged to learn something new and also encouraged about the progress that is being made for those living with Dravet syndrome. She told me that she was going to donate to DSF. Whether she did or not, I don’t know. But she left that office with an awareness of a condition that very few people know about and I left that office happy that one more person was able to see a glimpse into my every day life and my daughter’s daily struggle.
Join me in bringing awareness to Dravet syndrome and showing your support of DSF by not only purchasing a shirt but also sharing with your friends and family. You never know when the opportunity to educate someone will present itself.