Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
In a world where social media is omnipresent, an organization and company’s need to create social media brand ambassadors within the platforms is becoming more and more apparent. In a global poll, Statista.com looked at social media users and where they get most of their news information. A whopping 48% of people in the United […]
Looking for Brand Ambassadors to help further the mission of DSF! Read More »
We are so excited to announce the cohort of Family Network Ambassadors for the 2024-2025 term! These volunteers are all parents of children and adults with Dravet syndrome. Because of that they all possess the ability to truly empathize and understand the journey as a family living with, battling, and working through life with Dravet
Join Us in Welcoming our New Family Network Ambassadors Read More »
The pipeline for new therapies to address Dravet syndrome in 2024 is encouraging. There are several ongoing clinical trials for potential new treatments and even more in development. In today’s blog I will highlight a compound that is being investigated in a variety of human diseases and some recent work demonstrating there may be potential
Investigating PBA as a Treatment for Epilepsy Read More »
This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research. 15 years of connecting and supporting families. 15 years of raising awareness of Dravet
Celebrating 15 Years! Read More »
Dravet Syndrome Foundation (DSF) is excited to announce the promotion of Meredith Bankston to Event Coordinator. Meredith joined the organization in 2022 and has demonstrated dedication and skill in her previous role as Fundraising Assistant, leading to her advancement within the organization. In her new position, Meredith will play a crucial role in overseeing and
Meredith Bankston Promoted to Event Coordinator Read More »
This has been an exciting year for the field of Dravet syndrome and DSF. The success of DSF and our many accomplishments is all due to our engaged patient community and loyal supporters. As a result of that support, in 2023, DSF had many exciting highlights: We awarded 8 research grants, totally $2.475M, including an
Community. Research. Progress. Updates from 2023! Read More »
It is a continuing trend that research related to Dravet syndrome (DS) has robust representation at the annual American Epilepsy Society (AES) Meeting. DS came up across sessions large and small throughout the meeting, highlighting examples of the advancements in diagnosis, treatment algorithms, preclinical modeling, and novel genetic therapies that are occurring for DS. Notably,
2023 American Epilepsy Society Meeting Dravet-focused Recap Read More »
DSF held the 14th annual Research Roundtable on the evening of Thursday, November 30, 2023. The initial DSF Research Roundtable was held in 2010, and was truly a small gathering of founding families with a handful of researchers and clinicians familiar with Dravet syndrome. They sought to understand the current state of research and to
14th Annual DSF Research Roundtable Read More »
The NFL’s “My Cause, My Cleats” campaign is a fundraiser that allows players and staff to express their commitment to the causes that are most important to them, and wear their hearts on their feet. We are honored that Charles Byrd, an assistant NFL strength and conditioning coach for the New Orleans Saints, rocked a pair of
Myla-Rose and “My Cause, My Cleats” Read More »
DSF was established around a central mission of advancing research for Dravet syndrome. A key way in which DSF accomplishes this mission is our yearly grant application cycle. At the 2023 Research Roundtable, DSF proudly announced the allocation of an impressive $2.475 million to eight grants, bringing the total amount that DSF has directed to
DSF Announces 2023 Grant Awards Read More »
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