Decoding Dravet Blog

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 […]

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

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,

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.