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This year, DSF has the opportunity to sponsor a family (up to 4 people) to attend this incredible event, thanks to a sponsorship from Sofie’s Journey. What does the sponsorship cover? The sponsorship covers ground transportation, flights, hotel accommodations, stipend for meals and tickets to Disneyland for Wednesday, November 20, 2024 for a family of […]

Whether you opt to organize a gala, arrange a fundraising walk, initiate a social media fundraiser, or engage in a virtual event, you play a crucial role in transforming the landscape of Dravet syndrome. Our team is committed to assisting you throughout your fundraising journey, recognizing that your efforts are vital in sustaining our vibrant

A proclamation is an official designation of an event and can be a great way to educate the public about a specific issue or bring attention to a cause. A proclamation is an effective tool for gaining public recognition of your event because it carries the full support of a key government official in your

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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

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!  

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

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