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.

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 www.seizureactionplans.org. 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 [...]

Looking Forward

By |2020-12-31T12:44:16-05:00January 1st, 2021|Categories: Decoding Dravet Blog|

Wow - what a year! I think we can all agree that 2020 was hard. Even for our community that is accustomed to constantly having to adapt and change plans, as well as go through periods of social isolation for the health and well-being of our loved ones, 2020 presented challenges that none of us [...]

PAME 2020: A Parent’s Perspective

By |2020-12-23T09:07:23-05:00December 18th, 2020|Categories: Decoding Dravet Blog|

 SUDEP and mortality in epilepsy are important but scary topics for the Dravet syndrome community. It is important for our patient families to be informed on new research and updated guidelines to keep their loved ones safe. Every two years, Partners Against Mortality in Epilepsy (PAME) hosts a meeting to improve the understanding of, and [...]

Helping to Move Research Forward

By |2020-11-26T21:11:17-05:00November 27th, 2020|Categories: Decoding Dravet Blog|

DSF was built around the need to fund Dravet syndrome-specific research in order to assure better treatment options and the best quality of life for our patient community. The founding members discovered that epilepsy research in general was underfunded and by the time you funneled down to a rare epilepsy, such as Dravet syndrome, there [...]

Giving Thanks for DSF’s Community and Supporters

By |2020-11-16T17:45:39-05:00November 20th, 2020|Categories: Decoding Dravet Blog|

As Thanksgiving approaches, I am struck by the debt of gratitude I have for the many people - including patient families, clinicians, researchers, supporters, and organizations - that have enabled DSF to serve the Dravet syndrome community by funding important research, raising awareness, and offering support to affected individuals and their families. Living with Dravet [...]

Seizure Action Plan Coalition

By |2020-11-11T10:39:13-05:00November 13th, 2020|Categories: Decoding Dravet Blog|

The Dravet Syndrome Foundation, in collaboration with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Alliance, announced last week that they have launched the Seizure Action Plan (SAP) Coalition to educate people with epilepsy, their caregivers, and healthcare professionals about seizure emergency rescue protocols and the importance of personalized seizure action plans. The SAP Coalition [...]

Go to Top