Decoding Dravet
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.
That Age Was So Hard
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 as Director of Family and Caregiver Engagement after serving as a Volunteer Parent Ambassador [...]
A Light at the End of the Tunnel
This week's guest blog post comes from Ashley Kerns. Ashley resides with her 3 children and furbaby in Lake Charles, Louisiana. Her daughter was recently diagnosed with Dravet Syndrome earlier this year. Ashley works at her family’s marine construction business, Mike Hooks, LLC. When she isn’t busy being mommy, Ashley enjoys running and traveling. Her hope is that this blog post finds its way to another desperate, crazy, mamma looking [...]
Day of Dravet Regional Workshops
Save the Date for the 2019 Day of Dravet Workshop near you! Recognizing that it was often difficult and/or too expensive for families to travel to DSF's family & professional biennial conference, we wanted to offer another educational opportunity that would be easier for our community to access. In 2017, as an offshoot of the DSF Family Network, DSF hosted our first series of regional Day of Dravet [...]
Building Your Child’s Team of Medical Professionals
Your relationship to your child’s medical team has everything to do with their health and well-being. For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach treatment. Thanks to advancements in the last decade in the understanding of DS, there has [...]
A Dravet Mother’s Day
A Dravet Mother's Day Guest Post by Wendy Fry 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 as Director of Family and [...]
June is Dravet Syndrome Awareness Month!
Help DSF raise awareness, as well as research funding, during Dravet Awareness Month. Many hurdles exist in the Dravet syndrome (DS) community – including an understanding of the syndrome as well as the funds needed to research and find better treatment options. When you have a rare disease the largest setback for progress can be the numbers. When a disease is less common it complicates where the funding [...]