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.

2021 Dance for Dravet

By |2021-09-23T17:58:50-05:00September 24th, 2021|Categories: Decoding Dravet Blog|

We are excited to be hosting our first in-person event since the start of the pandemic! The Brennan Family will host their third annual Dance for Dravet, on Friday October 22, at the Third Degree Glass Factory in St Louis, Missouri. The event is held in honor of their 4-year-old family member Anna Odlaug, who [...]

2021 Day of Dravet – Featuring Experts from Our Community!

By |2021-09-16T12:12:29-05:00September 17th, 2021|Categories: Decoding Dravet Blog|

As mentioned in last week’s blog post we are very excited for this year’s Day of Dravet workshops which will consist of 5 sessions focused on topics important to caregivers. There will be a session held each Saturday of October, running from 12-3pm ET. We are excited to be pulling in many experts from our [...]

Strategic Plan Progress Report – Year 3

By |2021-08-31T15:59:47-05:00September 3rd, 2021|Categories: Decoding Dravet Blog|

A strategic plan for a nonprofit acts as a blueprint to focus on what direction the organization will move in. It brings together the organization’s mission and strategy to help its constituents better understand what its priorities are and how they will be achieved. It also allows the organization the opportunity to evaluate its progress, [...]

Join us for our 5th annual Day of Dravet workshops this October!

By |2021-08-16T16:55:12-05:00August 20th, 2021|Categories: Decoding Dravet Blog|

Each fall, DSF typically hosts five Day of Dravet regional workshops across the U.S. to bring our community together in person to learn about the latest in Dravet syndrome, connect with one another, and be a part of a DSF’s shared vision for better options and outcomes for affected individuals and their families.  This year, [...]

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 |2021-09-16T10:57:18-05:00August 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 |2021-09-12T16:59:21-05:00August 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 [...]

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