Our biennial Day of Dravet workshops kick off on September 16th, in Denver, Colorado. Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those […]
There is still time to register for a Day of Dravet workshop! Read More »
The fulfillment of our mission is only possible thanks to the generous support of our community. But did you know that there are many unique ways to support our vital work, outside of a personal donation? Be a Fundraiser: Creating a personal campaign page gives you a chance to do something small, but make a
Unique Ways to Support the Mission of DSF Read More »
We are honored to have the opportunity to auction off a custom painting created by Pindar Van Arman, an award winning AI artist who builds, codes, and experiments with robots that paint in a variety of styles. Pindar worked with Dr. M. Scott Perry to bring an AI project, Spikeangelo, to Cook Children’s Medical Center
Pindar Van Arman Auction benefiting DSF Read More »
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 »
June 23rd is International Dravet Syndrome Awareness Day. On this occasion, DSF, alongside families, supporters, and organizations globally, sheds light on this rare and severe form of epilepsy affecting 1 in 15,700 individuals. Beginning in infancy, Dravet syndrome is a lifelong disorder characterized by recurrent and diverse seizure types, including prolonged seizures necessitating immediate medical
June 23 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 »
The first question that is often asked by newly diagnosed families is when there will be a cure for Dravet syndrome. Rare diseases face common research challenges and Dravet syndrome is no exception. With a small patient population, research funding is typically non-existent and patient data is limited, making research difficult and financially unappealing to
Can Dravet syndrome be cured? Why research is so important. Read More »
