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.

What is Special about a Specialty Pharmacy? A Tour of AnovoRX

By |2020-07-08T12:06:52-05:00July 10th, 2020|Categories: Decoding Dravet Blog|

While many of the families in the Dravet syndrome community obtain one or more of their child’s medications (such as Diacomit or Epidiolex) by mail from a specialty pharmacy, other families are not familiar with specialty pharmacies and the services they offer. A specialty pharmacy supplies medications for rare, complex, and/or chronic conditions, and offers [...]

FINTEPLA® Receives FDA Approval for Treatment in Dravet Syndrome

By |2020-06-26T07:46:18-05:00June 25th, 2020|Categories: Decoding Dravet Blog|

On June 25th, 2020, the FDA announced approval of FINTEPLA® (fenfluramine) oral solution, CIV for the treatment of seizures associated with Dravet syndrome in patients 2 years of age and older. In two Phase 3 placebo-controlled clinical trials FINTEPLA demonstrated significant reductions in convulsive seizure frequency in patients whose seizures were not adequately controlled on [...]

Welcome our New Research Coordinator

By |2020-06-02T07:21:08-05:00June 5th, 2020|Categories: Decoding Dravet Blog|

We are so excited to welcome Veronica Hood, PhD, to DSF as our new Research Coordinator. Veronica has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University of Colorado. She spent 10 years in laboratory settings researching how small changes in genetic [...]

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 [...]