Media Contact

For media inquires or more information on Dravet syndrome or the Dravet Syndrome Foundation, please contact the organization.

Mary Anne Meskis
Executive Director

Dravet Syndrome Foundation
PO Box 3026
Cherry Hill, NJ 08034

203.392.1955
maryanne@dravetfoundation.org

Newsroom & Press Releases

July 13th, 2022: Dravet Syndrome Foundation Releases Voice of the Patient Report

Today, the Dravet Syndrome Foundation (DSF), the largest non-governmental funder of Dravet syndrome-specific research, released its "Dravet Syndrome Voice of the Patient" report, summarizing outcomes from a February 2022 Externally Led Patient Focused Drug Development (EL-PFDD) meeting. For the first time ever, parent caregivers and family members were able to share the lived experience of patients living with Dravet syndrome, a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime.

June 23rd, 2022: Dravet Syndrome Foundation Launches New Website

Dravet Syndrome Foundation (DSF), the largest non-governmental funder of Dravet syndrome-specific research, is proud to announce a new website launch today, following the unveiling of its new logo on June 1st. The new site is available at www.dravetfoundation.org, and offers a clean, modern design, easy navigation, and helpful tools and resources.Visitors to the new site can stay informed with all of the latest information on Dravet syndrome, ranging from family resources, research updates, clinical trial opportunities, best care practices, and more.

June 1st, 2022: Dravet Syndrome Foundation Unveils New Brand Identity Reflecting Its Transformation and Strategic Vision

Dravet Syndrome Foundation (DSF) unveiled their new brand identity that supports the transformation of the organization launched in September 2009. The new look and feel represents the organization’s history and highlights its strategy for the future. And while it includes a new logo and corresponding colors and fonts, the Foundation’s mission remains the same.

June 13th, 2022: DSF Highlights New Episode of Lifetime® TV’s “Behind the Mystery” Segment of “The Balancing Act®” on Dravet syndrome

Today, the Dravet Syndrome Foundation (DSF) called attention to a Dravet syndrome episode of The Balancing Act airing on Lifetime TV on a specialized, recurring segment devoted to rare and genetic diseases. The extended 30-minute “special edition” live segment of The Balancing Act Presents Behind the Mystery of Dravet Syndrome first aired at 7:30am ET this morning and follows the diagnosis and treatment journey of a Dravet patient and family.

Feb 21, 2022: Dravet Syndrome Foundation announces 2022 DSF Family & Professional Conference

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.

Feb 8, 2022: Second Annual Seizure Action Plan Awareness Week Scheduled for February 14-21

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.

Jan 26, 2022: Dravet Syndrome Foundation to Host First Externally-Led Patient Focused Drug Development Meeting for Dravet Syndrome

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.

Dec 3, 2021: Dravet Syndrome Foundation Awards $650,000 in Grants to Five Research Projects Focused on Dravet Syndrome

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.

July 6, 2021: Early Diagnosis and Seizure Triggers of Dravet Syndrome

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.

Feb 1, 2021: Seizure Action Plan Awareness Week Scheduled for February 8-14

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.

Dec 11, 2020: Dravet Syndrome Foundation Announces 2020 Research Grant Awardees

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.

Nov 2, 2020: Dravet Syndrome Foundation Announces New ICD-10 Codes Designated for Dravet Syndrome

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.

Nov 1, 2020: New Coalition Launches to Promote Importance of Seizure Emergency Plans

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.

Oct 7, 2020: The Dravet Syndrome Foundation Establishes Endowment Fund

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.