Decoding Dravet Blog

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

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

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

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

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

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