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Mary Anne Meskis

Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council. She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF. Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

Cora

Tell us about yourself and the Dravet patient in your lifeThis is Cora. She is a 2 year old sweet and sassy little lady. She is a pandemic baby! She has an older sister named Maggie. Her mommy is Jen and daddy is Chris. She has a pet dog named Lager and a fish named …

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Join DSF as we go Behind the Mystery of Dravet Syndrome!

As part of Dravet Syndrome Awareness Month this June, we were pleased to partner with The Balancing Act on their Behind the Mystery episode highlighting Dravet syndrome. Behind the Mystery is a special segment dedicated to revolutionizing the way the health care system works for those suffering from rare and genetic disorders, highlighting some of …

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Jacob

Tell us about yourself and the Dravet patient in your life Hello, This Is Jacob Dean. Jacob lives with his mother & step dad. We are from NE Ohio. He is going to be 11 years old August 2022. Jacob really enjoys skateboarding, he doesnt know how to push, but he can ride & hold …

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Sophia

Tell us about yourself and the Dravet patient in your lifeI’m a single mom to my beautiful 11 year old daughter Sophia. We currently live in Aurora, CO. We love singing, dancing, reading books, cooking, and painting together. Other favorites of Sophia are bowling, riding her tricycle, playing board games, and going to school. When …

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Musa

Tell us about yourself and the Dravet patient in your lifeMusa is a happy baby, loves to explore and eat almost everything. He has 3 older siblings that love him so much! He loves the water and to be outside. We live in Dallas, TX! When did the patient’s seizures begin?Seizures started at 4 months …

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Tayla-Mai

Tell us about yourself and the Dravet patient in your lifeWe live in Warton, Preston Lancashire, Tayla-mai has two older siblings, we enjoy going on dog walks and playing football in the garden. When did the patient’s seizures begin?Tayla-mai had a chest infection when she was 6 months old, I’d put her down for a …

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Jeremiah

Tell us about yourself and the Dravet patient in your lifeWe live in Colorado and it gives us great joy to see Jeremiah run around and make sweet troubles. Happy to see him live his little yet hugely important life. He is so different as far as his diagnosed Dravet Syndrome and his awesome little …

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