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.

DSF Virtual Meet-Ups

By |2020-04-03T17:30:41-05:00April 3rd, 2020|Categories: Decoding Dravet Blog|

Social distancing will mean we will be staying further apart from one another physically in the coming weeks. Our team and community were disappointed by the postponement of our 2020 Conference, as well as our fundraising events through the end of June. As a Dravet parent, I recognize the importance of these DSF events for [...]

Welcome to Our New Board Members

By |2020-03-24T22:13:55-05:00March 27th, 2020|Categories: Decoding Dravet Blog|

Please join us in welcoming our two newest board members, Ashley Kerns and Dr. Joseph Sullivan, who will officially begin their terms on April 1, 2020. Ashley resides in Westlake, Louisiana with her three children, Michael, age 9, and Samuel, age 6, and Katie, age 1. Katie was diagnosed with Dravet syndrome at six months [...]

How can DSF help during these uncertain times?

By |2020-03-19T12:52:50-05:00March 20th, 2020|Categories: Decoding Dravet Blog|

This was a difficult blog post for me to sit down and write because my heart has been so heavy for our Dravet community and the world at large. We are essentially at war, against an invisible enemy. The situation is unprecedented in our lifetime and there is so much uncertainty and fear. But, what [...]

Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community

By |2020-04-06T16:47:09-05:00March 13th, 2020|Categories: Decoding Dravet Blog|

March 13, 2020  Due to quickly evolving information, recommendations may be subject to change and will be updated as needed.  Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. For more comprehensive and up-to-date information [...]

COVID-19 & DSF Conference Update

By |2020-03-13T11:41:47-05:00March 10th, 2020|Categories: Decoding Dravet Blog|

Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). With our biennial conference scheduled for June, we [...]

2020 DSF Patient Assistance Grant Program

By |2020-03-05T15:45:40-05:00February 28th, 2020|Categories: Decoding Dravet Blog|

2020 DSF Patient Assistance Grant Program As our community well knows, living with Dravet syndrome has significant direct and indirect costs for the patient's family. In a 2018 publication it was found that the average total annual financial burden for a family with a child with Dravet syndrome was $106,378. These costs included direct [...]

Belviq recall and off-label use in the Dravet community

By |2020-03-10T12:13:49-05:00February 21st, 2020|Categories: Decoding Dravet Blog|

It is not uncommon in a rare disease like Dravet syndrome (DS) to have a physician prescribe a medication for “off-label” use by their patient. This means that the drug is not being used in the manner specified in the FDA’s approved package labeling and is being used for a disease that it is not [...]

Happy Valentine’s Day to Our Caregivers

By |2020-03-10T13:02:30-05:00February 14th, 2020|Categories: Decoding Dravet Blog|

This Valentine’s Day, I want to recognize and applaud the amazing caregivers in our community. It may not seem like a traditional message for this holiday, but Valentine’s Day is about celebrating love. And let’s face it - what we do as caregivers, day in and day out, is a constant expression of love. It [...]

New rescue medication options for the Dravet community

By |2020-03-10T13:08:37-05:00February 7th, 2020|Categories: Decoding Dravet Blog|

Those with Dravet syndrome have epilepsy that is typically not well controlled. In addition to frequent seizures, many patients regularly experience status epilepticus, which are prolonged seizures lasting more than 5 minutes. This is a serious medical emergency which can be life threatening and requires emergency intervention with rescue medications. Patients may also experience seizure [...]