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.

The importance of sharing the patient and family experience with Dravet syndrome

By |2019-09-24T17:14:15-05:00September 27th, 2019|Categories: Decoding Dravet Blog|

Your personal experience is an important resource that offers valuable insight into the patient journey and the needs of the Dravet syndrome (DS) community. While each of us has a compelling story to tell, the decision to share your story is a very personal one. There are two important but very different ways that [...]

When There are Problems with Your Child’s IEP

By |2019-09-10T17:43:49-05:00September 13th, 2019|Categories: Decoding Dravet Blog|

In last week’s blog, I shared an overview of the IEP process. But, what if you are concerned that promised services and supports are not being provided? It is important to remember that your child’s Individualized Education Program (IEP) is a binding document between the school district and the parents. And while the IEP [...]

The ABCs of IEPs – Learning the Basics

By |2019-09-05T12:56:36-05:00September 6th, 2019|Categories: Decoding Dravet Blog|

As our children head back to school this fall, many of our families may be participating in their annual, or even their first, Individualized Education Program (IEP) meeting for their child. If you are new to the IEP process, it can seem overwhelming on where to start and what your rights and the rights [...]

Race for Research

By |2019-08-21T10:55:30-05:00August 23rd, 2019|Categories: Decoding Dravet Blog|

Are you looking for a way that you can turn your love for fitness into a fundraising activity and see the real impact of your actions for DSF? Your next marathon, distance biking, 5K, or other athletic event could be the start of something wonderful. By signing up for DSF’s Race for Research program, [...]

Dravet Birthdays

By |2019-08-20T09:15:34-05:00August 16th, 2019|Categories: Decoding Dravet Blog|

This week’s guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny’s diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome. Wendy joined #teamDSF in March 2018 [...]

DSF Parent Ambassador Program

By |2019-08-09T09:17:23-05:00August 9th, 2019|Categories: Decoding Dravet Blog|

Having a loved one diagnosed with Dravet syndrome is scary and often overwhelming, even with guidance from the best medical professionals. The DSF Family Network was established with the hope that it would provide families with the support and reassurance that only another patient family can offer. The programs of our network include our [...]

Overview of Current Rescue Medications

By |2019-07-29T15:14:32-05:00August 2nd, 2019|Categories: Decoding Dravet Blog|

Parents of a child or adult with Dravet syndrome are acutely aware of the need for rescue medications due to the frequency of prolonged seizures and/or seizure clusters that are experienced by the patient community. Rescue medications work quickly to stop atypical seizures and help to avoid emergency situations. They are prescribed with the [...]