The 5th annual Dance for Dravet will take place on Friday, October 6th at Third Degree Glass Factory in St Louis, Missouri. Started in 2019 by the Brennan and Odlaug families, the event was designed to raise awareness of Dravet syndrome and raise funds for DSF, in honor of family member Anna Odlaug who is …
We are excited to add three new staff members to help us better serve our patient community. Join me in welcoming Shannon Cloud, Rich Maxey, and Austin Watson to #teamDSF! Shannon Cloud – Patient Advocacy Director Shannon lives in Smyrna, GA with her husband Blaine and their three children. Their oldest child, Alaina, had her …
Rich was born, raised, and currently resides in Enumclaw, WA. He has spent most of his career working in a local manufacturing plant programming welding robots and as an IT Analyst. He is married and has two boys, Owen and Zachary. Rich now spends most of his time troubleshooting and repairing off-road vehicles and buggies. …
Rich Maxey – Family & Caregiver Engagement Coordinator Read More »
As the Family Network Coordinator, Austin oversees the Family Ambassador and Brand Ambassador Programs, acts as a moderator for online support groups, organizes gatherings both digital and live, acts as liaison between families and DSF, and other duties to further the mission of DSF. Originally from Northwest Washington, Austin lives in Boise, Idaho with her …
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 …
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 …
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 …
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 …
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 Erin Reoyo – DSF Family Network Liaison 11:00am-11:45pm Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:45am-12:15pm Valtoco to the Rescue Nancy Santilli, NP 12:15pm-12:30pm Sibling Camp Update Laurie …
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