Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet 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.
We are kicking off Dravet Syndrome Awareness Month on June 1st, and there are plenty of ways to participate this year! Your support and hard work has been instrumental in the progress made for our patient community in the last decade. Now more than ever, we need your help! Please commit to raise public awareness […]
Participate in Dravet Syndrome Awareness Month this June! Read More »
As part of Dravet Syndrome Awareness Month this June, we were pleased to partner with The Balancing Act on their Behind the Mystery episode highlighting Dravet syndrome. Behind the Mystery is a special segment dedicated to revolutionizing the way the health care system works for those suffering from rare and genetic disorders, highlighting some of
Join DSF as we go Behind the Mystery of Dravet Syndrome! Read More »
Last week, I had the honor of re-introducing our veteran Parent Ambassadors and introducing our newest Parent Ambassadors from the Midwest. This week, it is my pleasure to continue those introductions and hope you’ll join me in welcoming our newest Parent Ambassadors from the Northeast and West regions: Jennifer Marasco-Kuhn – Pennsylvania (Northeast region) Jennifer
DSF Parent Ambassador Introductions – Part 2 Read More »
In April 2016, just 6 short years ago, we received the devastating news that our (then) 2 year old son had an SCN1A gene mutation. Later diagnosed with Dravet syndrome, our lives were forever changed. We’ve gone through every emotion and, even now, continue to grieve. With our grief, we also took action and began
DSF Parent Ambassador Introductions – Part 1 Read More »
As our community knows, rare diseases don’t receive as much attention from researchers or funders like diseases that affect larger populations. Most people do not know about Dravet syndrome unless they are directly connected to it in some way. This is why DSF works so hard to raise awareness about Dravet syndrome, and why we
Join DSF for Storytelling Sessions Read More »
We are excited to welcome our three new board members who began their 3-year term of service on April 15, 2022. Learn more about them below and join us in welcoming them to #teamDSF! Nathan Batt Nathan lives in Atlanta, Georgia with his wife Whitney, and his two sons: Cooper 5 and Colton 3. Cooper
Welcome to our New Board Members! Read More »
DSF is excited to be hosting its 2nd butterfly release, Wings of Hope, on June 25, 2022. This butterfly release will honor those living with Dravet syndrome, celebrate hope, and remember those who have passed. The release will take place on the last day of our 2022 Conference – June 25th – at The Worthington
Wings of Hope Butterfly Release Read More »
From 2010-2015, Ciara’s Butterfly Bash annual fundraising gala was named in honor of DSF Founder Lori O’Driscoll’s daughter. In January 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). Ciara’s courage and positive attitude in fighting Dravet syndrome made her a symbol of hope and inspiration to countless others. Her perseverance and strength
2022 Ciara’s Spirit of Hope Nominations are Open! Read More »
After having to postpone our scheduled conference in 2020, we are excited to be able to gather face-to-face again this June in Fort Worth, Texas. From June 23rd to 25th we have a full schedule that you won’t want to miss! Here are 5 reasons you will want to be there: Educational opportunities. Nothing compares
Five Reasons to Attend the 2022 DSF Conference! Read More »
In today’s blog we are recapping a recent publication by Cohen et al that reported the results of a study aimed at better understanding the relationship between quality of life and other measures of health and well-being in individuals with severe genetic developmental epilepsies (called developmental and epileptic encephalopathies, or “DEEs”). The Dravet Syndrome Foundation
Article Recap: Quality of Life in Genetic DEEs Read More »
