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 Dravet Syndrome Foundation (DSF) held a Family & Professional Conference in Fort Worth, Texas on June 23-25 of 2022 in collaboration with Dr. Scott Perry and Cook Children’s Medical Center. DSF generally holds these conferences every 2 years, although due to the COVID-19 pandemic, there has not been an in-person conference since 2018. Needless […]
2022 DSF Family & Professional Conference Recap Read More »
Whether you are a beginner on the bike or a seasoned cyclist, our Century Ride is the challenge for you! Many cyclists love pedaling dozens or hundreds of miles to relax, de-stress, exercise, take in the beautiful scenery – and now they can cycle and support DSF. Our Century Ride (100 miles) is a fun,
Join us this July and August in Cycling for a Cure! Read More »
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
Dye It for Dravet Read More »
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.
The New DSF Website is Here! Read More »
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
How to Use the New DSF Logo Read More »
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
2022 Conference Countdown! Read More »
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,
New Logo. Same Mission. Read More »
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 »
This website is made possible through educational grants from our partners. Partners did not have a role in developing content. The information you obtain at this site is not intended to be medical advice, please read our medical disclaimer. Thank you to:
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