Decoding Dravet Blog

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

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

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.

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

DSF started as a small, volunteer-led group in 2009 and has grown into a professional organization that serves patient families, healthcare professionals, researchers, industry partners, and other stakeholders in the Dravet syndrome community. In addition to offering resources, education, and support to patient families, we are the largest non-governmental funder of Dravet syndrome-specific research and

Together, the Dravet syndrome community managed to accomplish some pretty amazing things in 2022. The year started off with our virtual Externally-Led Patient-Focused Drug Development meeting on Dravet syndrome in February. This meeting was a long-awaited opportunity for the Dravet syndrome patient community to educate representatives of the Food and Drug Administration (FDA) and pharmaceutical