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.
Update on DSF Caregiver Burden Video Series
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 [...]
The Emotional Toll of Having an Ill Child: 6 Myths About PTSD
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 [...]
Jackson’s Song
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 [...]
November is National Epilepsy Awareness Month
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 treatment that works for them. And, as the Dravet community knows all too well, epilepsy [...]
SUDEP Action Day is October 23rd!
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 safety of their child each night when they put them to bed. Because of the [...]
2019 Dash for Dravet on Turkey Day!
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 old, fast or slow – we encourage participants of all ages and ability levels! Most [...]