What to watch for from DSF in 2023

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 excited to share some of our upcoming objectives with you.

Our first 5-year strategic plan ran from 2018-2022. We have begun the planning process for our next 5-year plan that will be released later this year. You will have an opportunity in coming months to complete a survey and weigh in on what programs matter most to you and your family. Our focus remains on putting community priorities first, so your input is needed. Please watch for more details on how to participate.

We will continue our strong focus on research. In order to assure access to tools and resources that will help academic researchers as well as pharmaceutical and biotech companies, we are working on a multi-pronged research initiative that will be centered around research readiness and new assets. These tools and data will help to avoid unnecessary delays that could prevent or slow research progress, as well as to help us understand more about Dravet syndrome. Expect an announcement from us later this year with all of the details on this exciting initiative.

We are working on several new resources to help our patient families navigate living with Dravet syndrome. These efforts will include a series of patient community webinars, a support group for fathers, video resources in Spanish, and our new monthly Heart to Heart virtual sessions. And, this fall we are excited to return to in-person Day of Dravet workshops, with dates and locations to be announced soon. If you don’t already receive our e-newsletters, be sure to sign-up today to stay in the know.

In 2023, we want to increase the number of our Steps Towards a Cure fundraising and community events across the U.S. Not only do these events help DSF raise more funds for our research and advocacy programs, but they also offer the rare opportunity for our community to come together and connect with one another. To help increase the incentive to plan an event, we are excited to offer a new opportunity for our event coordinators. Individuals who host a Steps Towards a Cure event can earn registration and hotel room credits for our next conference in June 2024 (location to be announced soon). For details on this new program or for questions about hosting an event, email Misty, our Campaign Director.

There are exciting things happening, so be sure to stay tuned for more information as the year progresses. Thank you for your involvement and support of DSF!

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