Mary Anne Meskis

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 and the Rare Epilepsies Network Registry. 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 Illinois with her husband and three children, the youngest of whom has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

Share the Patient Voice – Epilepsy Research Benchmarks

By |2020-09-10T16:19:06-05:00September 11th, 2020|Categories: Decoding Dravet Blog|

Twenty years ago, in March 2000, the National Institute of Neurological Disorders and Stroke (NINDS) along with the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), the Epilepsy Foundation, and the National Association of Epilepsy Research Centers co-sponsored a White House initiated conference, Curing Epilepsy: Focus on the Future. One of the [...]

Free Concert Event – Joey’s Song!

By |2020-08-26T18:00:05-05:00August 28th, 2020|Categories: Decoding Dravet Blog|

DSF is honored to partner with Joey’s Song for this year’s Remote & Uncontrolled virtual concert. Mark your calendars and tune in to our webpage at 7:50pm est on Wednesday, September 16th! Our evening will begin with a welcome from DSF, followed by the live stream of the concert. Tune in for this free event, [...]

DSF Strategic Plan 2020 Update

By |2020-08-17T14:29:48-05:00August 21st, 2020|Categories: Decoding Dravet Blog|

Strategic planning for a nonprofit organization such as the Dravet Syndrome Foundation (DSF) is an important investment of time and resources that provides enormous benefits. It brings clarity and agreement on the organization’s mission and allows preparation for the future. When a community is focused on the same outcomes, they become invested in a common [...]

Day of Dravet Virtual Workshop – October 17, 2020

By |2020-08-13T17:39:42-05:00August 14th, 2020|Categories: Decoding Dravet Blog|

Each fall, the Dravet community looks forward to DSF’s Day of Dravet regional workshops. As a part of our Family Network program, DSF usually hosts five workshops each fall 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 [...]

Back to School Anxiety in the Dravet Community

By |2020-08-06T09:31:28-05:00August 7th, 2020|Categories: Decoding Dravet Blog|

While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. They miss their routine, their therapies, and the opportunity for socialization. Parents who have had to step in as “teacher and therapist” during distance learning often report that they are [...]

Taking Steps Toward a Cure

By |2020-07-30T16:27:33-05:00July 31st, 2020|Categories: Decoding Dravet Blog|

Since 2009, DSF Steps Toward a Cure walks have gathered the Dravet community to unify our voices, increase awareness about Dravet syndrome and generate support for those who suffer from its potentially devastating challenges. Funds raised at these events have helped DSF to fund over $4.6M in research and over $160K in Patient Assistance Grants [...]

Lessons Learned: The Importance of the Patient Voice

By |2020-07-15T11:12:48-05:00July 17th, 2020|Categories: Decoding Dravet Blog|

Patient-Centered Outcomes Research (PCOR) is research that provides patients and their clinicians with evidence-based information in order to help them make more informed healthcare decisions. It also gives patients the opportunity to express what is most important to them and answer questions about the potential benefits and harms of different care options, given a patient’s [...]

What is Special about a Specialty Pharmacy? A Tour of AnovoRX

By |2020-07-08T12:06:52-05:00July 10th, 2020|Categories: Decoding Dravet Blog|

While many of the families in the Dravet syndrome community obtain one or more of their child’s medications (such as Diacomit or Epidiolex) by mail from a specialty pharmacy, other families are not familiar with specialty pharmacies and the services they offer. A specialty pharmacy supplies medications for rare, complex, and/or chronic conditions, and offers [...]

FINTEPLA® Receives FDA Approval for Treatment in Dravet Syndrome

By |2020-06-26T07:46:18-05:00June 25th, 2020|Categories: Decoding Dravet Blog|

On June 25th, 2020, the FDA announced approval of FINTEPLA® (fenfluramine) oral solution, CIV for the treatment of seizures associated with Dravet syndrome in patients 2 years of age and older. In two Phase 3 placebo-controlled clinical trials FINTEPLA demonstrated significant reductions in convulsive seizure frequency in patients whose seizures were not adequately controlled on [...]

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