Shannon lives in Smyrna, GA with her husband Blaine and their three children. Their oldest child, Alaina, had her first seizure at four months old and was diagnosed with Dravet syndrome in 2009 at age four. Shannon is originally from Pickerington, Ohio, and graduated from Florida State University in 1997 with a degree in Management […]
Shannon Cloud – Patient Advocacy Director Read More »
As you think about your charitable giving this year, you might have additional opportunities to help reduce your taxes, while maximizing your support for DSF. Here are some ways to give back that are better than cash and will help you make the most of your donation. Donor Advised Fund (DSF) Grants  Donor Advised
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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
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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 »
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 »
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