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.
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 intent to be used as needed, rather than on a daily basis as the other [...]
I think that anyone who has a child with a rare disease has been met with a well-meaning, “I don’t know how you do it.” My response is typically that I do it because I love my son, so I don’t have a choice but to attempt to make his life the best it can be. But what I usually don’t mention is that the days that are most [...]
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, [...]