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.
Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. These workshops take place on odd-numbered years, opposite of our …
As we edge closer to our second Steps Toward a Cure event benefiting the Dravet Syndrome Foundation, I feel led to tell Will’s story and how we got here – fighting for a cure through fundraising. Will was born a healthy baby. He was right on track developmentally until one day, at 3 months old, …
One of our very own patients deserves special recognition for her recent fundraising efforts. Bridget Fullam, an 18 year old living with a Dravet syndrome diagnosis from Montvale, NJ, has helped DSF secure $100,000 through two grants from The Marilyn Lichtman Foundation for our research grant program. Bridget met the President of the Foundation in …
We invite all members of the Dravet syndrome community – patient families, clinicians, researchers, and industry partners – to join us in supporting our bi-annual awareness t-shirt fundraising campaign! Twice a year, we offer unique shirt designs – first, for June which is Dravet Syndrome Awareness Month and again for November, which is Epilepsy Awareness …
At DSF, our mission is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. To accomplish this mission, DSF is currently developing our five-year strategic plan to set our priorities and initiatives for 2023-2028. As part of our …
Patient Families – Help Shape the Future of DSF! Read More »
As a caregiver for a child or adult with Dravet syndrome, it is normal to have feelings of anger, depression, and resentment. The emotional role of caregiving is stressful and can be overwhelming. Caregiver burnout is real, so it is important to find emotional support and the resources you need to prioritize your mental health …
The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. Our dedicated board members serve as fiduciaries and play a vital role in ensuring DSF has a sustainable future by adopting …
Thank you to our Departing Board President and Welcome to our New Board Member Read More »
We are pleased to announce that the 2024 DSF Biennial Family & Professional Conference will be held next year in Minneapolis, Minnesota, on June 20-22. The conference and associated activities will be held at the JW Marriott hotel, which is connected to the Mall of America. Our 6th biennial conference will bring patient families, clinicians, …
Last month, I had the opportunity to attend Rare Disease Week on Capitol Hill with the EveryLife Foundation for Rare Diseases. This event was a unique opportunity to unite with rare disease patients, caregivers, and advocates from around the United States to discuss and advocate for federal legislative initiatives that may impact those living with …
In 2020 the COVID-19 pandemic completely disrupted the lives and health of the United States and the world. The development of vaccinations against COVID-19 were prioritized, and many people came together to create and test those vaccination options in an attempt to slow the pandemic and prevent more loss of life. Three years later In …
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