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.
The Kuhn family has a 2-year-old daughter named Cora with Dravet syndrome. Since diagnosis in February of 2021, Cora has experienced over 12 hospitalizations due to unstoppable and life-threatening seizures that needed medical intervention. Cora’s mom, Jen, decided in October 2021 to donate her hair to a child’s cancer organization and also to dye it …
Every family’s Dravet syndrome journey is unique, which is why we updated our website today to best serve our community, meeting each individual where they are on their family’s medical journey. Whether you’re navigating a new diagnosis or well-acquainted with Dravet syndrome, we’ve made sure that we’re here for you every step of the way. …
As you may know, this month, the Dravet Syndrome Foundation (DSF) released an updated brand identity, which includes a new logo, colors, and font. We have refreshed our logo to reflect who we are today and to symbolize our future. We believe the new look reflects the Foundation’s growth since 2009 and emulates our large …
There is just one-week left to register and join us at this year’s DSF Family & Professional Conference in Fort Worth, Texas, on June 23-25th, in collaboration with Cook Children’s Medical Center. While this event is important for all of our community stakeholders, it is such a special opportunity for our patient families. Along with a fantastic line …
After twelve years, DSF is releasing an updated brand identity, which includes a new logo, colors, and font. We have refreshed our logo to reflect who we are today and to symbolize our future. We believe the new look reflects the Foundation’s growth since 2009 and emulates our large scope of work, including research, awareness, …
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 …
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 …
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 …
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