Decoding Dravet – Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation.
My name is Mary Anne Meskis. I am the Executive Director of the Dravet Syndrome Foundation and I have an adult son with Dravet syndrome. My blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
You can anticipate that you will have some worries when you become a parent. You are fully responsible for this new little person and for keeping them safe. When they are home there are dozens of safety measures you can implement - smoke detectors, fencing, safety gates, etc. As they grow and develop, you will teach them to achieve a certain level of independence so you become more comfortable [...]
As a parent of a 19 year old son with Dravet syndrome, I recognize that the idea of giving up your time to participate in any type of research may sound overwhelming or next to impossible. Your days are already packed from morning to night with the constant care of your child, including therapies, medical appointments, dealing with insurance issues, educational plans, and much, much more. But, caregiver involvement [...]
Sponsored by: Earlier this year, Dravet Syndrome Foundation (DSF) was approached by Greenwich Biosciences, to discuss and find a meaningful way that they could give back to the Dravet syndrome community. Our discussion covered the many needs within our community, particularly the burden of our caregivers. As a result, DSF has developed a multi-year project known as Caregiver Connect, to serve our patients and caregivers. The program is [...]
"If it were not for this tiny little genetic mutation, would she be a softball player, a dancer, or a musician? Would she be a good student?" - Shannon Cloud, DSF Parent Ambassador This week's guest blog post comes from DSF Southeast Parent Ambassador Shannon Cloud. Shannon lives in Smyrna, GA (in the metro Atlanta area) with her husband Blaine and their three children. Their oldest child, Alaina, [...]
What I want to tell the younger parents is this. You will evolve. The fear doesn’t go away, but it won’t always consume you. -Barbara Swoyer This week's guest blog post comes from Barbara Swoyer. She and her husband live just outside of Boston, MA. They are the parents of two boys, and their younger son, Jake, has Dravet syndrome with Secondary Mitochondrial Dysfunction. Not diagnosed until age [...]
This week's guest blog post comes from DSF Parent Ambassador Morgan Turpin. Morgan is a full-time genetic scientist, a mother of two, a part-time writer, a parent ambassador for Dravet Syndrome Foundation, and an avid researcher and advocate for her son. She aims to spread awareness about Dravet syndrome and the difficulties of parenting a child with a complex medical condition. Battle-Heavy Years If there is one thing my [...]