Mary Anne Meskis

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.

June 23 is Dravet Syndrome Awareness Day!

Uncategorized / By Mary Anne Meskis

June 23rd is International Dravet Syndrome Awareness Day. On this occasion, DSF, alongside families, supporters, and organizations globally, sheds light on this rare and severe form of epilepsy affecting 1 in 15,700 individuals. Beginning in infancy, Dravet syndrome is a lifelong disorder characterized by recurrent and diverse seizure types, including prolonged seizures necessitating immediate medical […]

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2023 Day of Dravet: Midwest – Agenda

Uncategorized / By Mary Anne Meskis

Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:35am Welcome Mary Anne Meskis – DSF Executive Director 10:35am-10:50am DSF Programs & Initiatives for Families Jamie Cohen, CPA – DSF Finance & Program Director 10:50am-11:00am Family Introductions 11:00am-11:45pm Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:45pm-12:15pm Valtoco to the Rescue Vinay Puri, MD

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2023 Day of Dravet: Northeast – Agenda

Uncategorized / By Mary Anne Meskis

Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:35am Welcome Mary Anne Meskis – DSF Executive Director 10:35am-10:50am DSF Programs & Initiatives for Families Jamie Cohen, CPA – DSF Finance & Program Director 10:50am-11:00am Family Introductions 11:00am-11:45am Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director (remote) 11:45pm-12:15pm Valtoco to the Rescue Steven Wolf,

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2023 Day of Dravet: Southeast – Agenda

Uncategorized / By Mary Anne Meskis

Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Mary Anne Meskis – DSF Executive Director 10:45am-11:00am DSF Programs & Initiatives for Families Tatiana Lopez – DSF DEI Coordinator 11:00am-11:45pm Overview of Dravet Syndrome Veronica Hood, PhD – DSF Scientific Director 11:45am-12:15pm Valtoco to the Rescue Eric R. Vernier, MD 12:15pm-12:30pm Sibling Camp Update Laurie

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2023 Day of Dravet: Mountain – Agenda

Uncategorized / By Mary Anne Meskis

Time Session Speaker 10:00am-10:30am Registration & Breakfast 10:30am-10:45am Welcome Veronica Hood, PhD – DSF Scientific Director 10:45am-11:00am DSF Programs & Initiatives for Families Erin Reoyo – DSF Family Network Liaison 11:00am-11:30pm Overview of Dravet Syndrome Kelly Knupp, MD – Children’s Hospital Colorado 11:30pm-12:00pm Valtoco to the Rescue Nancy Santilli, NP 12:00pm-12:15pm Sibling Camp Update Laurie

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Can Dravet syndrome be cured? Why research is so important.

Decoding Dravet Blog / By Mary Anne Meskis

The first question that is often asked by newly diagnosed families is when there will be a cure for Dravet syndrome. Rare diseases face common research challenges and Dravet syndrome is no exception. With a small patient population, research funding is typically non-existent and patient data is limited, making research difficult and financially unappealing to

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How to check if your photo is high-resolution

Uncategorized / By Mary Anne Meskis

Thank you for submitting your loved one’s photo(s) for use in DSF awareness and marketing materials. In order to guarantee that photos will be high enough resolution for print materials and/or social media, please review the information below. What are high resolution or hi-res images? High resolution images are pictures or photos where the media

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Dye it for Dravet is back!

Decoding Dravet Blog / By Mary Anne Meskis

Last year for Dravet Syndrome Awareness Month, we debuted Dye it for Dravet, after DSF Parent Ambassador Jen Kuhn and her hair stylist, Kelsi Morgan of PRIM Beauty Bar, came up with the idea for this fun and colorful fundraiser. This June, the challenge is back for the bold and the brave who want to

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June is Dravet Syndrome Awareness Month!

Decoding Dravet Blog / By Mary Anne Meskis

June is Dravet Syndrome Awareness Month in the U.S. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families. We

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Day of Dravet Workshops

Decoding Dravet Blog / By Mary Anne Meskis

Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. These workshops take place on odd-numbered years, opposite of our

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June 23 is Dravet Syndrome Awareness Day!

2023 Day of Dravet: Midwest – Agenda

2023 Day of Dravet: Northeast – Agenda

2023 Day of Dravet: Southeast – Agenda

2023 Day of Dravet: Mountain – Agenda

Can Dravet syndrome be cured? Why research is so important.

How to check if your photo is high-resolution

Dye it for Dravet is back!

June is Dravet Syndrome Awareness Month!

Day of Dravet Workshops

Dravet Syndrome

Caregivers

Get Involved