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.

Update on DSF Caregiver Burden Video Series

By |2019-11-13T09:07:08-05:00November 15th, 2019|Categories: Decoding Dravet Blog|

This week, I wanted to share an update on an exciting new project we are working on and to introduce you to the great partners we are working with to development this useful tool for our community. Earlier this year we were excited to receive an unrestricted grant from Greenwich Biosciences to start the [...]

The Emotional Toll of Having an Ill Child: 6 Myths About PTSD

By |2019-11-08T11:27:02-05:00November 8th, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from Katie Holcomb. Katie is the Manager of PTSD and Coping Initiatives for Ryan’s Case for Smiles, a non-profit dedicated to helping children and their families cope with life changing illnesses and injuries today, while building resilience for the future. In short, to feel better to heal better. [...]

Jackson’s Song

By |2019-10-31T11:17:43-05:00November 1st, 2019|Categories: Decoding Dravet Blog|

Today kicks off Epilepsy Awareness Month and we are excited to start it by sharing Jackson’s Song with our community! Jackson’s Song was written and recorded by Nashville Artist Sami Lin in honor of Jackson Aaron and his family and their day to day struggles of living with Dravet syndrome. Jackson’s parents (Jeff and [...]

November is National Epilepsy Awareness Month

By |2019-10-19T18:53:47-05:00October 25th, 2019|Categories: Decoding Dravet Blog|

Epilepsy is one of the least understood of all neurological diseases, and yet it is the fourth most common. We know that one in 26 people will be diagnosed with epilepsy and that over 65M people worldwide suffer from epilepsy. One-third of those with epilepsy experience uncontrollable seizures because there is no currently available [...]

SUDEP Action Day is October 23rd!

By |2019-10-14T10:50:29-05:00October 18th, 2019|Categories: Decoding Dravet Blog|

One of the top concerns for caregivers in the Dravet syndrome (DS) patient community is Sudden Unexpected Death in Epilepsy (SUDEP). Of the almost 20% mortality rate within the DS population, roughly half of those deaths are attributed to SUDEP. This is a terrifying statistic and our families live in constant fear for the [...]

2019 Dash for Dravet on Turkey Day!

By |2019-10-09T21:01:11-05:00October 11th, 2019|Categories: Decoding Dravet Blog|

Each November, DSF challenges you to Dash for Dravet on Turkey Day! Our annual virtual race takes place the week of Thanksgiving, and can be accomplished from any location you choose. You can walk, jog, or roll on the road, on the treadmill, or at the gym. And anyone can participate - young or [...]

2019 Research Grant Award Cycle

By |2019-10-02T17:09:09-05:00October 4th, 2019|Categories: Decoding Dravet Blog|

This is an exciting time of the year for DSF and our community - research grant applications were due a few weeks ago and our Scientific Advisory Board has begun reviewing this year’s applications. Announcements of our 2019 grant awardees will be made in early December, so stay tuned!  The primary reason DSF came [...]

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 [...]