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 …
We are excited to add three new staff members to help us better serve our patient community. Join me in welcoming Shannon Cloud, Rich Maxey, and Austin Watson to #teamDSF! Shannon Cloud – Patient Advocacy Director Shannon lives in Smyrna, GA with her husband Blaine and their three children. Their oldest child, Alaina, had her …
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Mary Anne Meskis – DSF Executive Director 10:45am-11:00am DSF Programs & Initiatives for Families Erin Reoyo – DSF Family Network Liaison 11:00am-11:45pm Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:45am-12:15pm Valtoco to the Rescue Nancy Santilli, NP 12:15pm-12:30pm Sibling Camp Update Laurie …
Today, June 23rd, marks International Dravet Syndrome Awareness Day. On this day, DSF along with families, supporters, and organizations worldwide, call attention to this rare and catastrophic form of epilepsy that affects 1:15,700. Beginning in infancy, Dravet syndrome is a lifelong condition characterized by frequent and different seizure types, including prolonged seizures which often require …
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Mary Anne Meskis – DSF Executive Director 10:45am-11:00am DSF Programs & Initiatives for Families Jamie Cohen, CPA – DSF Finance & Program Director 11:00am-11:45pm Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:45pm-12:15pm Valtoco to the Rescue Vinay Puri, MD 12:15pm-12:30pm Sibling Camp …
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Mary Anne Meskis – DSF Executive Director 10:45am-11:00am DSF Programs & Initiatives for Families Jamie Cohen, CPA – DSF Finance & Program Director 11:00am-11:45pm Overview of Dravet Syndrome TBA 11:45pm-12:15pm Valtoco to the Rescue Steven Wolf, MD 12:15pm-12:30pm Sibling Camp Update Laurie Bailey, UCB 12:30pm-1:30pm Lunch …
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Mary Anne Meskis – DSF Executive Director 10:45am-11:00am DSF Programs & Initiatives for Families Tatiana Lopez – DSF DEI Coordinator 11:00am-11:45pm Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:45am-12:15pm Valtoco to the Rescue Eric R. Vernier, MD 12:15pm-12:30pm Sibling Camp Update Laurie …
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Veronica Hood, PhD – DSF Scientific Director 10:45am-11:00am DSF Programs & Initiatives for Families Erin Reoyo – DSF Family Network Liaison 11:00am-11:30pm Overview of Dravet Syndrome Kelly Knupp, MD – Children’s Hospital Colorado 11:30pm-12:00pm Valtoco to the Rescue Nancy Santilli, NP 12:00pm-12:15pm Sibling Camp Update Laurie …
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Not only do I work with this organization, but I am also a mother to a 3-year-old daughter who was diagnosed with this genetic mutation and had her first seizure at only 2 months old. It took our family about 3 months of constant ER visits, admissions, and testing before we were able to identify …
Dravet Awareness Day Proclamation – Orlando, Florida Read More »
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