Strategic planning for a nonprofit organization such as the Dravet Syndrome Foundation (DSF) is an important investment of time and resources that provides enormous benefits. It brings clarity and agreement on the organization’s mission and allows preparation for the future. When a community is focused on the same outcomes, they become invested in a common purpose and a recognition of how to work together to achieve those outcomes.

In 2018, DSF developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization, and serves as a roadmap that outlines and prioritizes the work that needs to be done to achieve our short term and long term outcomes. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding current community priorities, emerging needs, and organizational strengths and vulnerabilities. We then offered our 1st annual update in August of 2019 to show the progress made to date.

Strategic plans are dynamic documents that lend flexibility to the organization. They help to anticipate and manage change so that when unexpected changes occur, an organization can determine the best way to deal with the change to move it’s mission forward, with little to no interruption. While we could never have anticipated that 2020 would bring a health crisis of this magnitude and an upheaval of life as we know it, DSF has strategically positioned itself throughout our development to assure financial stability in times of uncertainty. In addition, our strategic plan has prevented us from reacting in a hurried, scattered way to these unanticipated circumstances. With our strategic plan as our guide, our team has adapted quickly. While we have been forced to change some of our original plans for 2020, we have been working hard to continue to deliver the much-needed services that our community relies on, while continuing to nurture our relationships with our stakeholders, communicating transparently, and taking advantage of technology to continue to connect our community. All of our programs, including our Research Grant Awards and Patient Assistance Grants, remain intact. 

I am pleased to offer our 2nd annual strategic plan update on our progress from July 2019 – July 2020. I encourage you to take a look at how we have adapted to keep our mission on track and continue to engage our community in order to assure the continued impact of the important work we have been entrusted to undertake as stewards for the Dravet syndrome community. I hope this update will provide you with an opportunity to see our impact, recommit to our cause, and focus on the future work of DSF. It is the engagement and participation of all of our stakeholders thus far – families, clinicians, researchers, and industry – that has propelled the work in the field of Dravet syndrome forward at an unprecedented rate.

While our road to recovery will be long and challenging, I believe we will emerge from this crisis stronger, knowing how agile and adaptive that we were able to be without interrupting progress towards our mission. This is thanks in part to our 5-year strategic plan, which offered us a framework that has guided us through unanticipated decision making and problem solving. But more importantly, we continue to need YOU! Please help us to keep the good going by participating in whatever capacity your current situation allows. Some suggestions are:

It is because of the unified support and untiring fundraising efforts of our community that we have been able to award over $4.6M in research grants since 2010. If you have questions or suggestions on other fundraising opportunities, please reach out to our Campaign Director at

If you have questions on DSF’s strategic plan or future initiatives, you can reach out to me at