Finding Resilience Through Reframing: Parents’ Perspectives As a Dravet parent or caregiver, have you ever thought about the term “reframing?” Community member Barbara Swoyer recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine. In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing means […]
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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 Research Priorities with
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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 Zogenix we
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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 has a
Belviq Recall The pharmaceutical company, Eisai, recently withdrew Belviq (lorcaserin) from the market at the request of federal regulators. Some members of our patient community began taking Belviq off-label, after reports that it potentially helped with seizure control, even though it received FDA approval as a weight-loss drug. The abrupt withdrawal of Belviq has caused
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