Mary Anne Meskis

About 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 and the Rare Epilepsies Network Registry. 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 Illinois with her husband and three children, the youngest of whom has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

Call for Research Proposals!

By |2020-05-14T12:07:09-05:00May 15th, 2020|Categories: Decoding Dravet Blog|

The 2020 DSF Research Grant Program is open! Our Research Grant Program was established in 2010 to support investigator sponsored research in the field of Dravet syndrome, which historically has been critically underfunded. Our goal is to support and promote innovative approaches in Dravet syndrome research across disciplines to meet the critically important needs in [...]

Guest Blog: 24 Hours in the COVID-19 Ward with Marie

By |2020-04-08T10:32:34-05:00April 17th, 2020|Categories: Decoding Dravet Blog|

This week’s guest blog post comes from Yssa DeWoody, PhD. Yssa is the Cofounder and Director of Ring14 USA, a non-profit focused on improving the lives of those affected by rare genetic disorders of the 14th chromosome, in particular Ring14 syndrome, through research, advocacy, and community support. She also serves as the President of Ring14 [...]

DSF Virtual Meet-Ups

By |2020-04-16T16:54:31-05:00April 3rd, 2020|Categories: Decoding Dravet Blog|

Social distancing will mean we will be staying further apart from one another physically in the coming weeks. Our team and community were disappointed by the postponement of our 2020 Conference, as well as our fundraising events through the end of June. As a Dravet parent, I recognize the importance of these DSF events for [...]

Welcome to Our New Board Members

By |2020-03-24T22:13:55-05:00March 27th, 2020|Categories: Decoding Dravet Blog|

Please join us in welcoming our two newest board members, Ashley Kerns and Dr. Joseph Sullivan, who will officially begin their terms on April 1, 2020. Ashley resides in Westlake, Louisiana with her three children, Michael, age 9, and Samuel, age 6, and Katie, age 1. Katie was diagnosed with Dravet syndrome at six months [...]

How can DSF help during these uncertain times?

By |2020-03-19T12:52:50-05:00March 20th, 2020|Categories: Decoding Dravet Blog|

This was a difficult blog post for me to sit down and write because my heart has been so heavy for our Dravet community and the world at large. We are essentially at war, against an invisible enemy. The situation is unprecedented in our lifetime and there is so much uncertainty and fear. But, what [...]

Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community

By |2020-04-09T09:36:20-05:00March 13th, 2020|Categories: Decoding Dravet Blog|

Original Post:  March 13, 2020   Updated:  April 9, 2020 Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. For more comprehensive and up-to-date information refer to the Centers for Disease Control and Prevention (CDC) website. SYMPTOMS [...]

COVID-19 & DSF Conference Update

By |2020-03-13T11:41:47-05:00March 10th, 2020|Categories: Decoding Dravet Blog|

Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). With our biennial conference scheduled for June, we [...]