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 »
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 »
Thank you for submitting your loved one’s photo(s) for use in DSF awareness and marketing materials. In order to guarantee that photos will be high enough resolution for print materials and/or social media, please review the information below. What are high resolution or hi-res images? High resolution images are pictures or photos where the media
How to check if your photo is high-resolution Read More »
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 »
Right click to save any of the images below for use in promoting this year’s Give Up Your Cup!
2025 Give Up Your Cup Social Media Images Read More »
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