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.

DSF is looking for Board Members!

By |2021-06-17T12:48:20-05:00June 18th, 2021|Categories: Decoding Dravet Blog|

Are you looking for a way to truly have an impact on the future of Dravet syndrome? DSF is currently seeking professional, committed individuals who are passionate about finding a cure for Dravet syndrome for their Board of Directors. Board positions are a voluntary, three-year term that can be served from anywhere in the United [...]

Join us at our Dravet Discussion Lounges at this Year’s Conference!

By |2021-06-18T10:53:54-05:00June 11th, 2021|Categories: Decoding Dravet Blog|

With our conference in a virtual format this year, we wanted to find a creative way to see and chat with one another until we can meet again in person next year. We will be hosting our Dravet Discussion Lounges from 7-9pm ET on Friday, June 25th and Saturday, June 26th, for all registered conference [...]

2021 DSF Virtual Conference – June 24-26!

By |2021-06-03T08:40:00-05:00June 4th, 2021|Categories: Decoding Dravet Blog|

Join DSF to learn the latest on new treatments and research in the field of Dravet syndrome - in your home and on your schedule! Join us for our virtual conference on June 24-26 to watch live and participate in Q&A sessions with each presenter. If you can't join us live, presentations will be available [...]

2021 Dravet Syndrome Awareness Month

By |2021-05-25T11:20:26-05:00May 28th, 2021|Categories: Decoding Dravet Blog|

Your commitment and engagement as part of the DSF community has been instrumental in the progress that has been made for patients and families living with Dravet syndrome in the last decade. Now more than ever, we need your help!  Dravet Syndrome Awareness Month takes place each June in the U.S. This is our annual [...]

We Want to Hear from You!

By |2021-05-10T15:41:42-05:00May 14th, 2021|Categories: Decoding Dravet Blog|

What makes a great rare disease community? Regardless of how you define community, there’s one common thread: people. The Dravet syndrome community is made up of patient families, as well as clinicians, researchers, industry partners, and other supporters. We recognize that if you consider yourself a part of our great community, then you are involved [...]

2021 DSF Patient Assistance Grant Program

By |2021-04-27T15:47:56-05:00April 30th, 2021|Categories: Decoding Dravet Blog|

DSF has long recognized there is a significant financial burden, direct and indirect, for caring for a child or adult with Dravet syndrome. A 2018 publication found that the average total annual financial burden for a family with a child with Dravet syndrome was $106,378. These costs included direct costs, such as hospitalizations and in-home [...]

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