At the end of each year, I, along with our Board of Directors, conducts a comprehensive review of our strategic priorities for the upcoming year, ensuring they are in alignment with our long-term goals outlined in our current 5-year Strategic Plan. This review includes assessing current progress, identifying key challenges, and determining new objectives that will drive our organization forward.
Following the Board’s approval of the priorities, our staff gathers for an annual in-person meeting in January. During this meeting, we collaboratively build out our calendar and define specific tasks and milestones for the year ahead. This session is designed to translate the Board-approved priorities into actionable steps, ensuring clear alignment and commitment across all teams to meet our objectives for the year.
I am excited to share some of our key objectives for 2025:
- Day of Dravet workshops – these five regional events are opportunities for patients and families to come together to learn about research and treatment options, connect with one another, and be a part of our shared vision for a better outcome for those affected by Dravet syndrome. Dates and locations will be announced in late January. This year, we’ll be selecting locations that offer a fun family outing opportunity the day after the event for interested families at no additional cost.
- Continued recruitment for the Dravet Genome Study – this research initiative launched by the Children’s Hospital of Philadelphia and funded by DSF, aims to explore the broad range of outcomes observed in Dravet syndrome and other SCN1A-related epilepsies through genetic analysis and medical histories. A common topic of discussion within the community is the variability in patient responses to medications, differences in symptom severity, and diverse long-term outcomes, even among individuals with similar or identical SCN1A mutations. This study seeks to uncover additional genetic factors that may influence these varied outcomes, providing deeper insights into the genetic underpinnings of the condition. We have already surpassed halfway to our recruitment goal of 500 participants and are on track to reach full recruitment by the end of the year.
- Hosting a State of the Foundation Town Hall – this virtual event will be tailored to our patient community, providing an update on the current state of Dravet syndrome research, as well as DSF’s initiatives. We will highlight the importance of ongoing scientific advancements, share information on current clinical trials, and discuss how these developments can impact patients and families. In addition, we will explore the Foundation’s efforts to drive research forward, the role of patient advocacy in shaping research priorities, and how community members can get involved in supporting these critical initiatives.
- Representation at Rare Disease Week on Capitol Hill – our staff, along with community members, will participate in this multi-day event bringing together rare disease advocates from across the country to: meet with their Members of Congress; share their stories; learn about policy proposals; and advocate for policy changes.
- Strengthening our Legislative Advocacy efforts – with a focus on providing more resources to empower our constituents to effectively engage with their lawmakers on key issues that directly affect our patient community.
- Development of a new Patient Equity and Inclusion Committee – which will help to ensure that the voices and perspectives of all patient families are represented in key areas such as research priorities, health equity, and clinical trial inclusion. Additionally, the committee will work to identify gaps in our current educational resources and materials, ensuring they are inclusive and accessible to all.
- Formation of an AI Working Group – that will assess the current state of artificial intelligence (AI) as it applies to Dravet syndrome and prepare the organization to effectively support future AI-focused grants and initiatives. This group will work on building relationships with leading AI researchers and integrate them into DSF’s robust research community to foster long-term collaborations as well as formulate a long-term AI engagement strategy.
We are anticipating an exciting year ahead! Don’t forget to subscribe to our newsletter and follow us on social media to stay updated on our achievements in 2025 and to keep informed about local events and initiatives.
