Curing the Epilepsies 2021: Setting Research Priorities On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the “Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates to the current Epilepsy Research Benchmarks and Transformative [...]
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 [...]
Meet David and Natasha! This #MemberMonday meet David and Natasha! David Fischer is a 16-year-old high school student who lives in Newtown, Massachusetts with his parents and 3 siblings. His favorite subject in school is math, and he is a competitive swimmer and Rubik’s cuber as well as an avid chess player. He [...]
2020 Facebook Birthday Thanks We set ourselves a sizable goal in 2020 of raising $100K for Facebook Birthdays! Thanks to everyone that used their birthday as a way to spread awareness and raise funds. We not only met our goal, but we have surpassed that goal by over $9K!!! Every gift, no matter [...]
Thank You Dunkin' Joy in Childhood Foundation! Dunkin' Enfield franchise owner Jack Cadigan and The Dunkin' Joy in Childhood Foundation presented DSF staff member, Jenny Gallo, with a check for $5,000 in honor of the grand reopening of the Dunkin' Enfield, CT location. Jack nominated DSF for a grant in honor of his [...]
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 [...]
Meet Rykers Rally! This #MemberMonday meet Rykers Rally! Ryker was diagnosed with Dravet syndrome when he was 8 months old. It was a bittersweet moment for his parents, Erika and Ryan. Although they finally had a diagnosis, they were overwhelmed as they learned more and more about his diagnosis. Erika says, "I've often [...]
2020 Annual Campaign We hope you will join us as a supporter at DSF’s Annual Campaign and help us achieve our fundraising goal of $100,000. There are 2 easy ways you can give today: Online at www.dsfannualcampaign.org By mail, to DSF, PO Box 3026, Cherry Hill, NJ 08034 Please know that our community [...]
2020 DSF Grant Awardees DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that [...]
