Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. Thanks to continued collaboration with [...]
Silver Lining Challenge Being a caregiver for someone with a chronic and severe medical condition like Dravet Syndrome is exhausting, mentally and physically, even under the best of circumstances. Patient families were filled with even more fear and uncertainty than usual in 2020 with the spread of coronavirus (COVID-19) across the globe. Jim [...]
11th Annual Research Roundtable The Dravet Syndrome Foundation was honored to host our 11th annual Research Roundtable on December 3rd, 2020, the evening prior to the annual American Epilepsy Society (AES) Meeting. Given the current COVID-19 pandemic, the events were held virtually this year. Despite the limitation of not being ablt to meet [...]
Dravet Syndrome and Caregiving: Your Voices Heard and Answered The Dravet Syndrome Foundation, in collaboration with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Alliance, recently announced that they have launched the Seizure Action Plan (SAP) Coalition to educate people with epilepsy, their caregivers, and healthcare professionals about seizure emergency rescue protocols and the importance of personalized [...]
2020 Day of Dravet Registration is Open Join the DSF Family Network for our 4th Day of Dravet event on Saturday, October 17th. DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a [...]
DSF Disaster Relief Fund FAMILIES AFFECTED BY NATURAL DISASTERS DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. In addition to this program, we have also established the DSF Disaster Relief and Recovery Fund for patients with [...]
2019-2020 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]
Back to School Anxiety in the Dravet Community Join DSF for a session on Back to School Anxiety in the Dravet Community While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. In response to this, DSF is [...]
New Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to [...]
New Sibling & Parent Resources One of the greatest concerns of parents and caregivers in our community is the impact on siblings who have a brother or sister with Dravet syndrome. Their needs are frequently neglected because so much of the parents’ emotional energy and time is focused on the medical care of [...]
