The inaugural Seizure Action Plan (SAP) Awareness Week will be held February 8 to 15, organized by the Seizure Action Plan Coalition, which is a collaboration of the Dravet Syndrome Foundation, the Lennox-Gastaut Syndrome (LGS) Foundation and the Tuberous Sclerosis Alliance. The campaign is underwritten by presenting sponsor Neurelis, Inc. with generous supporting funding from UCB, Inc.

The Dravet Syndrome Foundation (DSF) announced their 2020 grant awardees at their 11th annual DSF Research Roundtable. DSF is pleased to be funding two 2-year research grants and an additional 1-year postdoctoral fellowship.

Dedicated ICD-10 codes for Dravet syndrome will make it easier for the field to conduct epidemiologic research and retrospective studies, determine true prevalence and morbidity and mortality rates, recruit patients for clinical trials, track outcomes of clinical interventions, and develop protocols for standard of care.

A collaboration of three non-profit organizations announced the launch of 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.

Dravet Syndrome Foundation has established the DSF Endowment Fund to support the foundation’s mission by providing an alternative source of funds for current and future use.

The project’s goal is to develop an ongoing collaboration with a greater understanding of the needs of the Dravet syndrome community.