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.
DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We places a high priority on funding research that has a clear path to genetic understanding, clinical application, and/or therapeutic development. Yesterday evening - at our 10th annual Research [...]
We Need You! Every day for more than 10 years, Dravet Syndrome Foundation (DSF) has been relentless in funding research, organizing our community, and helping to make advancements in the field of Dravet syndrome and other rare epilepsies. At the end of 2018, we saw two new FDA-approved medications come to market with an indication for Dravet syndrome, and several other potential treatments are in clinical trial or close [...]
You face a lot of difficult days when you are living with Dravet syndrome. As our Family & Caregiver Engagement Director, Wendy Fry, often says, Living with Dravet, we have high highs and low lows. Our families live in a constant state of flux and never know what is going to be happening with their loved one that day, that week, or a month from now. As caregivers we [...]
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 DSF Caregiver Connect Program, as an extension of our DSF Family Network. This multifaceted program [...]
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. She helps design and oversee programs that support each member of the family as they [...]
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 Karina) work with Sami Lin’s father (Scott) in the Chicago Police Department’s 16th District and [...]