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It all started in 2009, when four parents came together looking for connection with one another and a desire to improve outcomes for their own children who had been diagnosed with Dravet syndrome (DS). Since then, there have been many exciting advancements in the field of DS, many thanks in part to DSF. We have
DSF 5-year Strategic Plan Read More »
This holiday season, we want to say thank you. Your support has made a significant impact on our organization and community, and we are truly grateful. Wishing you a happy, healthy, and peaceful holiday season!
Holiday Wishes from DSF Read More »
A major challenge in the management of many epilepsies, including Dravet syndrome (DS), is the prolonged trial and error approach of determining whether or not a specific antiseizure medication (ASM) will work for a given patient. Testing an add-on therapy can take many months before it is determined to be ineffective, and for some it
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:35am Welcome Erin Reoyo – DSF Family Network Liaison 10:35am-11:20am Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:20am-11:45pm Family Introductions 11:45am-12:15pm Valtoco to the Rescue Nancy Santilli, NP 12:15pm-12:30pm Sibling Camp Update Laurie Bailey, UCB 12:30pm-1:30pm Lunch (Siblings will be eating offsite) 1:30pm-1:45pm DSF
2023 Day of Dravet: West – Agenda Read More »
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
Today is Dravet Syndrome Awareness Day! Read More »
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:35am Welcome Mary Anne Meskis – DSF Executive Director 10:35am-10:50am DSF Programs & Initiatives for Families Jamie Cohen, CPA – DSF Finance & Program Director 10:50am-11:00am Family Introductions 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
2023 Day of Dravet: Midwest – Agenda Read More »
Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:35am Welcome Mary Anne Meskis – DSF Executive Director 10:35am-10:50am DSF Programs & Initiatives for Families Jamie Cohen, CPA – DSF Finance & Program Director 10:50am-11:00am Family Introductions 11:00am-11:45am Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director (remote) 11:45pm-12:15pm Valtoco to the Rescue Steven Wolf,
2023 Day of Dravet: Northeast – Agenda Read More »
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
2023 Day of Dravet: Southeast – Agenda Read More »
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
2023 Day of Dravet: Mountain – Agenda Read More »
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