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. 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.

New Resource for your Child’s Healthcare Team

By |2021-04-14T13:38:09-05:00April 16th, 2021|Categories: Decoding Dravet Blog|

Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle after diagnosis, we frequently hear from parents that they feel that they are often the expert [...]

Social Media Signs – #fightdravet

By |2021-04-15T18:45:27-05:00April 15th, 2021|Categories: Uncategorized|

SOCIAL MEDIA SIGNS FOR DRAVET AWARENESS MONTH Show your support this June by clicking on a sign below to download and print your sign. Then be sure to share your photo holding the sign on social media so that we know who you are fighting for. Be sure to tag DSF and use the hashtag, [...]

Join the Fight!

By |2021-04-08T17:26:54-05:00April 9th, 2021|Categories: Decoding Dravet Blog|

Get ready for 2021 Dravet Syndrome Awareness Month this June! We invite you to JOIN THE FIGHT and show your support through our t-shirt fundraiser on Custom Ink, which runs from today through April 30th. Orders are estimated to ship around May 18th to assure you have them in hand for Dravet Awareness Month. Shirts [...]

Guest Blog: Results from DSUK survey on the patient experience with COVID-19 vaccinations provides reassurance

By |2021-04-01T09:11:10-05:00April 2nd, 2021|Categories: Decoding Dravet Blog|

Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the patient experience after vaccination. They have been kind enough to share this with us in the [...]

Finding Resilience Through Reframing: Parents’ Perspectives

By |2021-02-09T17:27:37-05:00February 12th, 2021|Categories: Decoding Dravet Blog|

As a Dravet parent or caregiver, have you ever thought about the term “reframing?”  This week’s guest blog post comes from Barbara Swoyer, who recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine.  In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing [...]

Seizure Action Plan Awareness Week

By |2021-02-01T17:38:33-05:00February 5th, 2021|Categories: Decoding Dravet Blog|

On February 1, 2020, the Seizure Action Plan (SAP) Coalition launched its new website at This new website offers information and resources for for patients, professionals, and advocacy organizations to learn about and spread awareness of: what a Seizure Action Plan (SAP) is the importance of a SAP in the health management of those [...]

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