The Dravet Syndrome Foundation (DSF) is proud to announce that its 2022 DSF Family & Professional Conference will take place across three days on June 23-25, 2022, in Fort Worth, Texas, in collaboration with Cook Children’s Medical Center.

From February 14 to 21, the Second Annual Seizure Action Plan Awareness Week will highlight the importance of having a seizure action plan in place. The awareness campaign is supported by the Seizure Action Plan Coalition, which is a collaboration of the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation and TSC Alliance. The campaign is underwritten by presenting sponsor Neurelis, Inc. with generous supporting funding from UCB, Inc.

The Dravet Syndrome Foundation (DSF) announced that the U.S. Food and Drug Administration (FDA) has approved it’s externally-led Patient Focused Drug Development (EL-PFDD) meeting on Dravet syndrome to be held on February 3, 2022 via live-stream. DSF encourages all community stakeholders to register for this meeting at www.dravet-el-pfdd.org.

The Dravet Syndrome Foundation recently awarded $650,000 in grants to five research projects. DSF has awarded over $5.6M to 49 research projects focused on Dravet syndrome since 2009. This year, JAM for Dravet has stepped forward to co-fund two of these projects with DSF.

The Dravet Syndrome Foundation recently collaborated with the NeurologyLive team to offer content on the importance of early diagnosis of Dravet syndrome as well as seizure triggers and comorbidities are discussed by key opinion leaders in the field. Thank you to Joseph Sullivan, MD and Elaine C. Wirrell, MD for their participation in this Peers & Perspective video.

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.