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.

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Arianna Dravet story

Arianna

Arianna lives in Texas with her parents and older sister. She loves music and likes to sing and dance. She also enjoy playing with her toys and swinging. When did Arianna’s seizures begin? Her seizures started the day after she turned 6 months old. The first two years she was hospitalized at least once a […]

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Dravet syndrome UK logo DSUK covid-19 survey

Guest Blog: Results from DSUK survey on the patient experience with COVID-19 vaccinations provides reassurance

Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the patient experience after vaccination. They have been kind enough to share this with us in the guest

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Finding resilience through reframing

Finding Resilience Through Reframing: Parents’ Perspectives

As a Dravet parent or caregiver, have you ever thought about the term “reframing?”  This week’s guest blog post comes from Barbara Swoyer, who recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine.  In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing

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