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.

Race for Research

By |2019-08-21T10:55:30-05:00August 23rd, 2019|Categories: Decoding Dravet Blog|

Are you looking for a way that you can turn your love for fitness into a fundraising activity and see the real impact of your actions for DSF? Your next marathon, distance biking, 5K, or other athletic event could be the start of something wonderful. By signing up for DSF’s Race for Research program, [...]

Dravet Birthdays

By |2019-08-20T09:15:34-05:00August 16th, 2019|Categories: Decoding Dravet Blog|

This week’s guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny’s diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome. Wendy joined #teamDSF in March 2018 [...]

DSF Parent Ambassador Program

By |2019-08-09T09:17:23-05:00August 9th, 2019|Categories: Decoding Dravet Blog|

Having a loved one diagnosed with Dravet syndrome is scary and often overwhelming, even with guidance from the best medical professionals. The DSF Family Network was established with the hope that it would provide families with the support and reassurance that only another patient family can offer. The programs of our network include our [...]

Overview of Current Rescue Medications

By |2019-07-29T15:14:32-05:00August 2nd, 2019|Categories: Decoding Dravet Blog|

Parents of a child or adult with Dravet syndrome are acutely aware of the need for rescue medications due to the frequency of prolonged seizures and/or seizure clusters that are experienced by the patient community. Rescue medications work quickly to stop atypical seizures and help to avoid emergency situations. They are prescribed with the [...]

The Need for Awareness of SUDEP

By |2019-07-19T17:33:47-05:00July 19th, 2019|Categories: Decoding Dravet Blog|

You can anticipate that you will have some worries when you become a parent. You are fully responsible for this new little person and for keeping them safe. When they are home there are dozens of safety measures you can implement - smoke detectors, fencing, safety gates, etc. As they grow and develop, you [...]

The Importance of Natural History Studies

By |2019-07-02T20:57:58-05:00July 12th, 2019|Categories: Decoding Dravet Blog|

As a parent of a 19 year old son with Dravet syndrome, I recognize that the idea of giving up your time to participate in any type of research may sound overwhelming or next to impossible. Your days are already packed from morning to night with the constant care of your child, including therapies, [...]

Learn about our newest program, Caregiver Connect

By |2019-07-01T21:08:50-05:00July 5th, 2019|Categories: Decoding Dravet Blog|

Sponsored by: Earlier this year, Dravet Syndrome Foundation (DSF) was approached by Greenwich Biosciences, to discuss and find a meaningful way that they could give back to the Dravet syndrome community. Our discussion covered the many needs within our community, particularly the burden of our caregivers. As a result, DSF has developed a [...]

Raising a Teenager with Dravet Syndrome

By |2019-06-26T14:28:07-05:00June 28th, 2019|Categories: Decoding Dravet Blog|

"If it were not for this tiny little genetic mutation, would she be a softball player, a dancer, or a musician? Would she be a good student?" - Shannon Cloud, DSF Parent Ambassador This week's guest blog post comes from DSF Southeast Parent Ambassador Shannon Cloud. Shannon lives in Smyrna, GA (in the [...]