This year there has been remarkable for progress and impact in the field of Dravet syndrome – a fantastic way to mark DSF’s 15th anniversary! Thanks to the collective dedication of our community and the generosity of our supporters, we have several major accomplishments to celebrate in 2024:
- We hosted our 6th DSF Family & Professional Conference – bringing together over 500 stakeholders including families, professionals, and industry members – to strengthen our community.
- We hosted our 15th Annual Research Roundtable, uniting leading researchers, clinicians, and industry experts from around the world. This event fostered collaboration, facilitated the sharing of groundbreaking insights, and advanced discussions on innovative approaches to improve the lives of individuals affected by Dravet syndrome.
- We proudly announced $1.4 million in new grant awards, supporting groundbreaking research initiatives aimed at advancing our understanding of Dravet syndrome and developing innovative treatments. These grants reflect our continued commitment to funding high-impact projects that address critical gaps in knowledge, improve patient outcomes, and bring us closer to life-changing therapies for those affected by this rare condition.
- Our executive team participated in more than 20 professional events, including scientific conferences, industry meetings, and advocacy forums. These engagements allowed us to strengthen relationships with key stakeholders, share updates on our initiatives, and explore new opportunities for collaboration. By expanding our network, we continue to amplify our outreach efforts and enhance the support available to the Dravet syndrome community.
- We successfully trained 15 new Family Ambassadors, further growing our network of dedicated volunteers who provide guidance, resources, and emotional support to families affected by Dravet syndrome. These ambassadors play a vital role in connecting families and fostering a sense of community across the country. Their dedication ensures that no family faces this journey alone.
- We introduced new support resources to better serve the Dravet syndrome community, including our Caregiver Connect webinar series, which provided caregivers with expert advice, practical tools, and emotional support on a variety of topics. Additionally, we launched virtual meet-ups specifically designed for grandparents, offering a dedicated space to share experiences, ask questions, and connect with others who play an important role in supporting loved ones with Dravet syndrome. These initiatives aim to strengthen the network of care and understanding for families navigating this challenging medical journey.
As we look ahead to 2025, there is much to be excited about!
- Our community is eagerly awaiting news on the start date for the Phase 3 clinical trial of zorevenursen, an antisense oligonucleotide (ASO) treatment developed by Stoke Therapeutics. We are in close contact with Stoke Therapeutics and will share updates and key information on the trial as it becomes publicly available. This investigational therapy has sparked considerable hope, as it holds the potential to become the first disease-modifying treatment for Dravet syndrome.
- We are excited to announce that we will host five regional Day of Dravet workshops across the U.S. during 2025. These workshops will provide valuable opportunities for families, caregivers, and professionals to come together, learn, and connect with others in the community. Specific dates and locations for these events will be announced in January, so stay tuned for further updates!
- Several representatives from our community will participate in Rare Disease Day on the Hill in February. This important event brings together advocates, patients, caregivers, and organizations from across the country to raise awareness and champion the needs of individuals living with rare diseases. DSF’s participation underscores its commitment to advocating for better resources, research funding, and policies that support the Dravet syndrome community and the broader rare disease population.
- We will host our 16th Annual Research Roundtable in Atlanta on December 4th. This highly anticipated event brings together leading researchers, clinicians, and advocates to discuss advancements in research and collaborative opportunities for the future. During the roundtable, we will also reveal the awardees of our 2025 Research Grant Cycle, highlighting the innovative projects and scientists selected to receive funding to drive critical progress in understanding and treating Dravet syndrome.
A heartfelt thank you to our supporters, partners, volunteers, and staff. We are deeply grateful to all who have stood by our mission this year. We are excited to see what advancements 2025 will bring for our community!
P.S. Want to get more involved in 2025 to strengthen our efforts? There are numerous ways you can help!
