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.
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 …
Medical expenses are high when you have a loved one with Dravet syndrome, and we know everyone in our community needs help at one time or another. By providing financial assistance for necessary medical equipment, the DSF Patient Assistance Grant (PAG) Program provides a valuable resource to patients, helping them offer the best quality of care …
The 2023 DSF Patient Assistance Grant Program is now open! Read More »
Dravet Syndrome Foundation (DSF) is excited to announce support and funding for a new special research project. DSF will support Dr. Satya Sahoo and Dr. Jeffrey Buchhalter to develop a Dravet Ontology. DSF is funding $240,000 over the next 2 years to support this effort. An ontology works as a framework to show connections and …
DSF Supports the Development of an AI-powered Dravet Ontology Read More »
Before having kids and beginning my journey as the new fundraising assistant for DSF, I spent 10 years at Starbucks as a general manager. It was a job that I thoroughly enjoyed but to say that it led to a coffee addiction is quite an understatement. Even now, almost 9 years after leaving Starbucks, I …
Three simple words make up DSF’s new tagline: Community. Research. Progress. We believe our new tagline is an external expression of our purpose and all that DSF has accomplished. Because rare diseases, such as Dravet syndrome, affect a small number of people relative to diseases such as cancer or diabetes, they are often considered lower …
Annually, the DSF Board of Directors, with input from the staff, decides on priorities and objectives for the year ahead. These strategies are designed with the needs of DSF and the Dravet syndrome community in mind. We feel that 2023 will be a pivotal year for DSF in our growth and development and I am …
DSF will be hosting monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask questions of DSF and its staff. We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome. …
A diagnosis brought us together. Our hearts keep us together. Read More »
Do you own a business or work for a national company that would benefit from national attention, while supporting the Dravet syndrome community? Corporate donations to nonprofit organizations such as DSF provide companies with a way to give back to the community, engage their employees, and improve brand perception. There are many ways that a …
In a recent Decoding Dravet post, we took a moment to highlight fathers and father-figures in our community. During the Day of Dravet workshops, DSF brought together a small group of Dravet Dads to have a heartfelt conversation about their unique experiences. The feedback from that session was so overwhelmingly positive that DSF proposed an …
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