Are you looking for a fun way to give back to DSF and help raise awareness of Dravet syndrome? Consider hosting a Steps Toward a Cure event! DSF Steps Toward a Cure is a series of family-friendly events that raise awareness and funds while celebrating our Dravet superheroes. These events take place throughout the year, …
McCall was born August 28, 2018- perfectly healthy, without any complications. Four of the sweetest months later, still nestled in her car seat at her well check appointment, her arm began to rhythmically bounce up from her lap and fall back down. Her pediatrician immediately, but charily, slipped out of the room to call the …
DSF has released its Dravet Syndrome Voice of the Patient report, summarizing outcomes from a February 2022 Externally Led Patient Focused Drug Development (EL-PFDD) meeting. For the first time ever, parent caregivers and family members were able to share the lived experience of patients living with Dravet syndrome. Parent caregivers and family members shared riveting stories …
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 …
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 »
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