Sudden unexpected death in epilepsy (SUDEP) is a topic that brings up difficult and complex emotions, and, as such, it often goes undiscussed. However, talking about SUDEP can empower families with awareness and preventative strategies, literally helping to save lives. Additionally, increased education surrounding SUDEP lends itself to advocacy efforts to advance research and end [...]
With so many clinical trials for Dravet syndrome actively enrolling, it is an important time to consider the impacts that talking about experiences in an ongoing trial can have on the outcomes. If you are participating in a clinical trial and observing particularly profound changes following treatment, it can be quite tempting to share that [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
As we roll into 2021, I wanted to remind our community of the many important resources that DSF offers to help patient families on this complex medical journey. We recognize that you deal with a lot each day and DSF is here to help. Brief overviews on each program can be found below or you [...]
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 Research Priorities with collaborative feedback from all the [...]
