Strategic Plan Progress Report – Year 3

A strategic plan for a nonprofit acts as a blueprint to focus on what direction the organization will move in. It brings together the organization’s mission and strategy to help its constituents better understand what its priorities are and how they will be achieved. It also allows the organization the opportunity to evaluate its progress, strengths, and needs.

In 2018, the leadership at DSF developed its first 5-year strategic plan to help bring clarity and alignment to what outcomes the organization needed to achieve to best serve the Dravet syndrome patient community. It also allowed us to take a step back and assess what short-term decisions could bring us to our long-term goals and help move our mission forward. And since a strategic plan is a dynamic document, it offered us flexibility when the COVID19 pandemic hit and changes outside of our control happened. By having the plan to focus us, we were able to accommodate the changes but stay on track with our overall goals. We have been able to continue to deliver the programs and services that our community relies on – from our conference to our Patient Assistance Grants to our Research Grants and annual Research Roundtable.

Our annual updates regarding our strategic plan offer the opportunity to share a synopsis of the significant events that have happened each year, and the progress we have made. I am proud to share our Year 3 update on our strategic plan, for July 2020-July 2021. Please read to learn how we have adapted during the pandemic and see our impact! To see our recent history and achievements, you can also review our Year 1 and Year 2 progress reports.

The pandemic has been a difficult time for everyone. I hope this strategic plan update inspires you and recommits you to the work we do. It is the stakeholder engagement of our entire community – families, clinicians, researchers, and industry – that has propelled the work in the field of Dravet syndrome forward at an unprecedented rate. We can’t allow our efforts to be slowed. If you have questions on DSF’s strategic plan or future initiatives, please reach out to me at

2021 Strategic Plan Progress Report
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