Caregiver Connect Grants Dravet Syndrome Foundation (DSF) has long recognized the many needs within our community, particularly the burden of caregivers. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On [...]
Caring for a loved one with Dravet syndrome or another DEE Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All Don’t miss, Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the [...]
2021 DSF Family & Professional Virtual Conference Learn the latest from top experts in Dravet syndrome! Here is your opportunity to hear the latest on new treatments and research in the field of Dravet syndrome on June 24th-26th - in your home and on your schedule. Join us live to participate in Q&A sessions with [...]
Order now for Dravet Awareness Month! Is your Super Siblings looking for volunteer hours for school? Is your Super Sibling interested in getting involved with DSF, but not sure where to start? We have the perfect opportunity for him or her. Choose from dozens of projects or suggest your own. Bake Sale Garage [...]
2021 DSF Family & Professional Virtual Conference Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge the gap until we can meet again in person next year. [...]
Patient Assistance Grant Program Opens March 1 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. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue [...]
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 [...]
