Meredith has been an active part of the Dravet community since her daughter, Eden, was diagnosed with Dravet syndrome in 2016. The DSF has directly impacted her life by advocating for approval of medications that were removed from the marketplace and connecting her with other families who are fighting Dravet syndrome. Because of these efforts, […]
Meredith Bankston – Event Coordinator Read More »
After spending the last 20 years in the insurance industry, Karen signed on in early 2023 as an Administrative Assistant for DSF. Karen has been a volunteer Parent Ambassador for the West Region of the DSF Family Network since 2015 and helped to bring the Day of Dravet events to San Francisco, Seattle, and Los
Karen Masters Foster – Family & Caregiver Engagement Read More »
Mason’s Movement Foundation is a 501(c)3 non-profit, established in 2020 by Matt and Amanda Langford in loving memory of their son, Mason Langford. Their foundation supports families locally, nationally, and internationally through research funding, grief support to families, and aid to those in need. They live to let Mason shine, and his legacy lives on through
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Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. They envision a globally connected community equipped to eliminate the challenges of rare disease.
Global Genes – Global Advocacy Alliance Partner Read More »
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
EveryLife Foundation Read More »
By connecting epilepsy centers with each other and with community service providers, and including people with epilepsy and their families, the Epilepsy Learning Healthcare System (ELHS) will empower all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects. DSF is proud to be a community partner
Epilepsy Learning Healthcare System Read More »
The Epilepsy Leadership Council (ELC) is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas
Epilepsy Leadership Council Member Read More »
Epilepsy Alliance America, founded in 2018, is a growing national organization representing like-minded local, regional, statewide, and even other national agencies dedicated to serving the everyday needs of people who live with seizures and epilepsy every day. DSF is proud to be a nonprofit partner.
Epilepsy Alliance America Read More »
At its most fundamental level, the Clinical Trials Transformation Initiative (CTTI) is a group of individuals and organizations that want to improve the quality and efficiency of clinical trials. It was co-founded by Duke University and the U.S. Food and Drug Administration in 2007 in an effort to identify and address challenges to well-designed, properly
Clinical Trials Transformation Initiative Read More »
Together, the Dravet syndrome community managed to accomplish some pretty amazing things in 2022. The year started off with our virtual Externally-Led Patient-Focused Drug Development meeting on Dravet syndrome in February. This meeting was a long-awaited opportunity for the Dravet syndrome patient community to educate representatives of the Food and Drug Administration (FDA) and pharmaceutical
What We Accomplished Together in 2022 Read More »
