A Recap of “Curing the Epilepsies 2021”

By |2021-01-08T01:12:00-05:00January 8th, 2021|Categories: Decoding Dravet Blog|

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 [...]

Looking Forward

By |2020-12-31T12:44:16-05:00January 1st, 2021|Categories: Decoding Dravet Blog|

Wow - what a year! I think we can all agree that 2020 was hard. Even for our community that is accustomed to constantly having to adapt and change plans, as well as go through periods of social isolation for the health and well-being of our loved ones, 2020 presented challenges that none of us [...]

PAME 2020: A Parent’s Perspective

By |2020-12-23T09:07:23-05:00December 18th, 2020|Categories: Decoding Dravet Blog|

 SUDEP and mortality in epilepsy are important but scary topics for the Dravet syndrome community. It is important for our patient families to be informed on new research and updated guidelines to keep their loved ones safe. Every two years, Partners Against Mortality in Epilepsy (PAME) hosts a meeting to improve the understanding of, and [...]

DSF Announces 2020 Grant Recipients

By |2020-12-04T01:56:47-05:00December 4th, 2020|Categories: Decoding Dravet Blog|

The Dravet Syndrome Foundation (DSF) announced the 2020 grant awardees last night at the 11th annual Research Roundtable. DSF is excited to be funding two 2-year research grants and an additional 1-year postdoctoral fellowship. Following this year’s awards, DSF’s total contribution to research projects will be nearly $5 million. The first of the 2-year grants [...]

Helping to Move Research Forward

By |2020-11-26T21:11:17-05:00November 27th, 2020|Categories: Decoding Dravet Blog|

DSF was built around the need to fund Dravet syndrome-specific research in order to assure better treatment options and the best quality of life for our patient community. The founding members discovered that epilepsy research in general was underfunded and by the time you funneled down to a rare epilepsy, such as Dravet syndrome, there [...]

Giving Thanks for DSF’s Community and Supporters

By |2020-11-16T17:45:39-05:00November 20th, 2020|Categories: Decoding Dravet Blog|

As Thanksgiving approaches, I am struck by the debt of gratitude I have for the many people - including patient families, clinicians, researchers, supporters, and organizations - that have enabled DSF to serve the Dravet syndrome community by funding important research, raising awareness, and offering support to affected individuals and their families. Living with Dravet [...]

Seizure Action Plan Coalition

By |2020-11-11T10:39:13-05:00November 13th, 2020|Categories: Decoding Dravet Blog|

The Dravet Syndrome Foundation, in collaboration with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Alliance, announced last week 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 seizure action plans. The SAP Coalition [...]

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