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.
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 »
As we approach the end of the year, we are proud to look back on our achievements. DSF started in 2009, when four parents came together looking for connection with one another and a desire to improve outcomes for their own children who had been diagnosed with Dravet syndrome. Now, 14 years later, the success
2024 DSF Annual Campaign Read More »
Last week’s blog post was a brief overview about how the Family Network Ambassadors and the Brand Ambassadors function within our organization to help further the mission of DSF. But let’s dive deeper… The mission of DSF is what drives us as a foundation and a community. We continually look for ways to deepen this
What do DSF Family Network Ambassadors and Brand Ambassadors do? Read More »
When you are going through something hard it’s always good to know that there are people “in the same boat” as you are. And while I appreciate the sentiment I’m not sure that it is the best way to talk about the community that we have as families living with Dravet syndrome. I think that
DSF Family Network and Brand Ambassadors Read More »
Have you heard the news? Dravet Syndrome Foundation (DSF) has earned a Four-Star rating by Charity Navigator, their highest possible rating. Their third-party accreditation validates our organization’s operational excellence and our rating reflects our strong financial health and ongoing accountability and financial transparency. And, this rating designates DSF as an official “Give with Confidence” charity!
DSF is designated an official “Give with Confidence” charity by Charity Navigator! Read More »
Last week, I had the opportunity to attend the 2023 Park City Epilepsy Meeting and an open house for the NIH/NINDS Epilepsy Therapy Screening Program (ETSP) contract site at the University of Utah. DSF was proud to sponsor the Park City Epilepsy Meeting this year, which focused on cutting-edge approaches to transform epilepsy therapies. Take-aways
Park City Epilepsy Meeting Recap Read More »
