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.

Hope Through Research

By |2019-02-11T08:53:15+00:00February 15th, 2019|Categories: Decoding Dravet Blog|

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie As Dale Carnegie once said, "Most of the important things in the world have been accomplished by people who have kept on trying when [...]

The Way You Carry It

By |2019-02-02T19:11:48+00:00February 8th, 2019|Categories: Decoding Dravet Blog|

It is not the load that breaks you down. It’s the way you carry it. Lena Horne, Singer It’s difficult to believe that my family has been living with Dravet syndrome for almost 19 years. I still remember breaking down when Elliot received his diagnosis at the age of four and I was [...]

Welcome to Decoding Dravet

By |2019-01-27T22:35:38+00:00February 1st, 2019|Categories: Decoding Dravet Blog|

Elliot with his sister Sophie in 2018 Welcome to my blog, Decoding Dravet. For those who don’t know me, I am Mary Anne Meskis and I was one of the founding members of the Dravet Syndrome Foundation, along with Lori O’Driscoll, Amanda Renz and Janice Stanley. In 2009, we were just a small group [...]

Attention Dravet Parents: National trial to assess drugs for severe seizures

By |2016-11-19T20:14:02+00:00November 19th, 2016|Categories: News|Tags: |

IMPORTANT INFORMATION FOR ALL FAMILIES A new clinical trial will compare three commonly used anti-seizure medications used to treat status seizures at 44 locations across the US. National EFIC rules allow research studies in certain emergency situations, such as this one, to be conducted WITHOUT PATIENT OR PARENTAL CONSENT. When this was discussed last year [...]