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.

Super Siblings Sessions

By |2021-08-07T11:30:50-05:00August 7th, 2021|Categories: Uncategorized|

Our Super Siblings Sessions will take place each Saturday in October from at 12:00pm-1:30pm ET. While parents and caregivers are attending the Day of Dravet sessions, Laurie Bailey from Zogenix will host our Super Sibling sessions to bring our amazing siblings together to connect and of course, have lots of fun! Siblings will have the [...]

Sessions for Families with Adult Patients

By |2021-10-12T11:51:19-05:00August 5th, 2021|Categories: Uncategorized|

Our Day of Dravet workshop on Saturday, October 23, beginning at 12:00pm ET, will focus on sessions that will be helpful for families who have an adult patient with the diagnosis of Dravet syndrome. Learn about topics surrounding transition and future planning. Sessions are presented by community experts - including other parents. Time [...]

Sessions for Families New to Diagnosis

By |2021-10-27T09:30:44-05:00August 5th, 2021|Categories: Uncategorized|

Our Day of Dravet workshop on Saturday, October 30, beginning at 12:00pm ET, will focus on sessions that will be helpful for families who are new to the diagnosis of Dravet syndrome. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be [...]

Brain First Parenting Workshops

By |2021-08-07T11:25:41-05:00August 5th, 2021|Categories: Uncategorized|

Our Day of Dravet workshops on Saturday, October 2nd, 9th, and 16th, beginning at 12:00pm ET, will offer a 9-hour workshop on behavior (broken into three, three-hour sessions), that will teach Brain First Parenting. Why 'Brain First'? What does the brain have to do with challenging behaviors? Everything, actually. Neuroscience research tells us that the [...]

The VIP Sibling Project

By |2021-08-05T10:28:14-05:00July 23rd, 2021|Categories: Decoding Dravet Blog|

All rare epilepsy families face challenges. Caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that constant care has an impact on every member of the family. Siblings who have a brother or sister with a rare epilepsy are often unselfish, dedicated, and demonstrate an amazing ability to see [...]

Be Seizure Ready for Back to School!

By |2021-07-16T07:25:27-05:00July 16th, 2021|Categories: Decoding Dravet Blog|

The Seizure Action Plan Coalition is excited to announce our 2021 Back to School initiatives: In 2020, the Seizure Action Plan (SAP) Coalition was formed by the Dravet Syndrome Foundation, the LGS Foundation, and the TSC Alliance to fill an unmet need in the epilepsy community. This collaborative effort is designed to raise awareness of what [...]

Miles for McCall

By |2021-07-08T11:55:31-05:00July 9th, 2021|Categories: Decoding Dravet Blog|

We are excited to announce a new multi-year fundraising and awareness event - Miles for McCall! Dan Hartley is a 49-year-old, US Navy Veteran and business owner, who is a former semi-professional ultra-runner who has competed in numerous ultramarathons and 100-mile races. Having converted to competitive ultra-cycling in 2020, Dan has a full schedule [...]

Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All

By |2021-06-12T13:15:14-05:00June 25th, 2021|Categories: Decoding Dravet Blog|

It is difficult to truly gauge both the financial costs and the significant humanistic toll of caring for someone with Dravet syndrome. Prolonged or repetitive seizures diminish quality of life not only for patients, but also for parents and caregivers, who may suffer loss of time from work, loss of employment, increased anxiety, and social [...]

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