Media Contact
For media inquires or more information on Dravet syndrome or the Dravet Syndrome Foundation, please contact the organization.
Mary Anne Meskis
CEO
Dravet Syndrome Foundation
PO Box 3026
Cherry Hill, NJ 08034
203.392.1955
maryanne@dravetfoundation.org
To share your child’s photo(s), video(s), and/or story with us, please visit our Media Submissions page or email patientstories@dravetfoundation.org.
Newsroom & Press Releases
December 18, 2024: Dravet Syndrome Foundation Funds Five New Research Grant Awards totaling $1.4M
Dravet Syndrome Foundation (DSF) announced the recipients of their 2024 research grants at the 15th annual Research Roundtable held on December 5th in Los Angeles, California. DSF is proud to fund five new research grants totaling $1.4 million this year. Three of these grants are made possible through the support of Marlins for Mason (Prather Family), Dance for Dravet (Brennan and Odlaug Families), and Budgetdog, LLC. With this funding, DSF has now contributed over $10.5 million to research since its inception in 2009.
November 5, 2024: 6th Annual Dance for Dravet raises over $547,000 to benefit Dravet Syndrome Foundation
On Friday, October 25th, over 400 guests gathered at Third Degree Glass Factory in St. Louis, Missouri, for the 6th annual Dance for Dravet hosted by the Brennan and Odlaug families in honor of 7-year-old Anna Odlaug, who has Dravet syndrome. This year the event raised over $547,00 in support of the Dravet Syndrome Foundation (DSF), a new record and continues to be the largest fundraiser for the Foundation. Over the past 6 years, Dance for Dravet has raised more than $ 2.3 million dollars.
August 23, 2024: Dravet Syndrome Foundation Partners with Mason's Movement Foundation
Dravet Syndrome Foundation (DSF) is pleased to announce its new partnership with the Mason’s Movement Foundation, aimed at providing additional support to bereaved families within our community. The Good Mourning Project, led by Mason’s Movement, is dedicated to offering resources, support, and remembrance items to newly bereaved parents and siblings.
August 21, 2024: 2nd Annual Marlins for Mason raises over $500,000 for Dravet Syndrome Foundation
Marlins for Mason is a marlin release tournament held in Ocean City, Maryland, to support the Dravet Syndrome Foundation (DSF). This annual event honors Mason Prather, a cherished 6-year-old member of the Ocean City fishing community who lives with Dravet syndrome.
December 12, 2023: Dravet Syndrome Foundation Announces 2023 Research Grant Awardees
Dravet Syndrome Foundation (DSF) announced their 2023 grant awardees at their 14th annual Research Roundtable on November 30. DSF is pleased to be funding 8 new research grants totaling $2.475M this year, including two that have been funded with support from JAM for Dravet (The Chang Family) and Marlins for Mason (The Prather Family). This brings the total amount of research funded by DSF since 2009 to over $9.1M.
December 1, 2023: Mary Anne Meskis Receives the 2023 Extraordinary Contributions to the Field of Epilepsy Award
DSF Executive Director, Mary Anne Meskis, was presented with the 2023 Extraordinary Contributions to the Field of Epilepsy Award during the 2023 Annual Meeting of the American Epilepsy Society (AES). This award is designated for those who have made extraordinary contributions across multiple fronts, including science, education, leadership, and advocacy. The award is only presented in those years when the AES board of directors determines there is an individual whose accomplishments embody the spirit of recognition.
October 18, 2023: DSF Welcomes New Board Members
Dravet Syndrome Foundation recently welcomed their newest board members, Gail Farfel, PhD, and Bill Kirshner, MD, who will help to support the organization’s work in the field of Dravet syndrome. Dravet syndrome is an intractable developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. Dravet syndrome is a rare disease, with an estimated incidence rate of 1:15,700, with the majority of patients carrying a mutation in the sodium channel gene SCN1A.
October 11, 2023: 5th annual Dance for Dravet sets new fundraising record
On Friday, October 06, 2023, guests gathered at Third Degree Glass Factory in St. Louis, Missouri, for the 5th annual Dance for Dravet benefiting Dravet Syndrome Foundation (DSF) and supporting the mission of DSF to fund cutting-edge research into Dravet syndrome and improve the quality of life for patients and families. Hosted by the Brennan and Odlaug families, this year's event raised $530,000 and counting!
September 5, 2023: Dance for Dravet, benefiting Dravet Syndrome Foundation, scheduled for October 06, 2023
The Brennan and Odlaug Families will host their 5th annual Dance for Dravet in honor of Anna fundraising event on Friday, October 6, 2023, to benefit the Dravet Syndrome Foundation (DSF) at the Third Degree Glass Factory in St Louis, MO. The event is held in honor of 6-year-old family member Anna Odlaug, who has Dravet syndrome. Funds raised at the event will help to fund cutting-edge research into Dravet syndrome to improve quality of life for patients and lead to a cure.
May 19, 2023: Strike Out Dravet benefiting Dravet Syndrome Foundation
On Thursday, May 11th, guests gathered at Kings Dining and Entertainment in the Seaport area of Boston for Strike Out Dravet. This fundraising event was previously held in New York City, and hailed as City Bash. This year’s event was hosted by local families in support of the mission of the Dravet Syndrome Foundation (DSF) to fund cutting-edge research into Dravet syndrome and improve the quality of life for patients and families.
April 12th, 2023: Strike Out Dravet benefiting Dravet Syndrome Foundation
Families from the local Dravet syndrome patient community in Boston, Massachusetts, will host Strike Out Dravet on Thursday, May 11, 2023 to benefit the Dravet Syndrome Foundation (DSF) at Kings Dining and Entertainment in Seaport. The event is set to be the premier event on the East Coast, having previously been held in New York as the DSF City Bash.
April 3rd, 2023: Dravet Syndrome Foundation Announces Board Changes
Dravet Syndrome Foundation (DSF) today announced a new board president, vice president, and secretary, as well as a new board member who will each help to support the organization’s work in the field of Dravet syndrome. Board president, Kate Hintz, will be stepping down from the board after completing two terms. DSF elected Theron E. Odlaug, PhD, as its new board president. Dr. Odlaug has served on the DSF board since 2019, most recently as board vice president. Ross Nicholas, former board secretary, will now serve as the board’s vice president, and board member Clare Carey will assume the role of board secretary. Josh Goldman will continue as treasurer. Our newest board member, Brad Galer, MD, began his three-year term with DSF effective April 1, 2023
December 12th, 2022: Dravet Syndrome Foundation announces 2022 Research Grant Awardees
The Dravet Syndrome Foundation (DSF) announced their 2022 grant awardees at their 13th annual DSF Research Roundtable on December 1st. DSF is pleased to be funding five new research grants totaling $690,000 this year, including two that have been co-funded with JAM for Dravet. That bring the total amount of research funded by DSF since 2009 to over $6.3M. Said Executive Director, Mary Anne Meskis, “DSF is proud to be the largest non-governmental funder of Dravet syndrome research worldwide, and is pleased to work with JAM for Dravet to increase our impact."
October 24th, 2022: Dance for Dravet 2022 St. Louis raises over $460,000 to benefit the Dravet Syndrome Foundation
On Friday, October 14, 2022, guests gathered at Third Degree Glass Factory in St. Louis, Missouri, for the 4th annual Dance for Dravet for the benefit of the Dravet Syndrome Foundation (DSF). Hosted by the Brennan and Odlaug families in honor of 5-year-old family member, Anna Odlaug, who has Dravet syndrome, the event raised over $460,000 and continues to be the largest fundraising event for the foundation in the nation.
August 9th, 2022: Dance for Dravet, benefitting the Dravet Syndrome Foundation, scheduled for October 14, 2022
The Brennan and Odlaug Familes will host their 4th annual Dance for Dravet in honor of Anna fundraising event on Friday, October 14, 2022, to benefit the Dravet Syndrome Foundation (DSF) at the Third Degree Glass Factory. The event is held in honor of 5-year-old family member Anna Odlaug, who has Dravet syndrome. Funds raised at the event will help to fund cutting-edge research into Dravet syndrome to improve quality of life for patients and lead to a cure.
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 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.
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.
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.
