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.

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 [...]

New ICD-10 Codes for Dravet Syndrome!

By |2020-03-10T13:05:20-05:00January 31st, 2020|Categories: Decoding Dravet Blog|

The International Classification of Disease (ICD) is a list first introduced in1948 by the World Health Organization (WHO) and is coordinated by the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC). It is a system used by healthcare providers to classify and code diagnoses, symptoms, and procedures [...]

Ciara’s Spirit of Hope Award Nominations Now Open!

By |2020-06-04T12:15:38-05:00January 24th, 2020|Categories: Decoding Dravet Blog|

Nominations are now open for the 2020 Ciara’s Spirit of Hope Award! I hope you will consider nominating an individual whose dedication through their volunteerism to DSF has been outstanding and inspiring to you.  From 2010-2015 the Spirit of Hope award was presented to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash, which was named [...]

2020 DSF Conference Registration is Now Open!

By |2020-04-06T16:41:20-05:00January 17th, 2020|Categories: Decoding Dravet Blog|

Registration for the 4th biennial DSF Family & Professional Conference is open! We are excited to be partnering with Cook Children’s Medical Center in Fort Worth, Texas, and Dr. Scott Perry on this educational and inspiring event which will take place from June 18-20, 2020. It is designed to unite all groups committed to improving [...]

DSF is Hiring a Research Coordinator

By |2020-03-10T13:17:38-05:00January 3rd, 2020|Categories: Decoding Dravet Blog|

We're Hiring a Research Coordinator! Are you a scientist who absolutely loves the work that Dravet Syndrome Foundation (DSF) does, but is looking for a change from the lab environment? We have just the opportunity for you! We’re looking for a community-oriented scientist to direct DSF’s research efforts. DSF is inviting applications for a Research Coordinator. [...]

What is the AES meeting, and why is there so much focus on it?

By |2020-03-10T13:25:23-05:00December 27th, 2019|Categories: Decoding Dravet Blog|

Special thanks to DSF Board President and Scientific Director, Nicole Villas, for sharing her perspective on the 2019 AES Meeting. The Dravet Syndrome Foundation´s 5 staff and 6 board members attended the American Epilepsy Society´s (AES) annual meeting in Baltimore, Maryland, from Dec. 5-9, 2019. As you read our newsletter and social media updates, you [...]