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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Building Your Child’s Team of Medical Professionals

For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach treatment. Thanks to advancements in the last decade in the understanding of DS, there has been significant progress

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The Importance of Fundraising for Research

Dravet Syndrome Foundation (DSF) offers programs that bring great value to the Dravet community through three primary pillars – Research; Professional Education; and Caregiver & Patient Support. Our community has done many important things that have helped to move the field forward. DSF’s grant program has awarded over $4.1M through 43 research projects. Thanks to

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Why You Should Be Wary of Online Health Information

The advent of the internet has been of considerable benefit to rare disease patient communities, including the Dravet syndrome (DS) community. It has given patient families the opportunity to easily connect; to find out about the latest in research, treatments, and clinical trials; and to locate medical specialists who are familiar with their disease. A

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The Power of a Connected Community & Industry Partnerships

Early in the development of DSF we could see that community connections, strategic alliances, and partnerships would be critical. As Paul Ryan said, Every successful individual knows that his or her achievement depends on a community of persons working together. By partnering up, we were able to not only produce meaning and value, but we

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