This has been an exciting year for the field of Dravet syndrome and DSF. The success of DSF and our many accomplishments is all due to our engaged patient community and loyal supporters. As a result of that support, in 2023, DSF had many exciting highlights:
- We awarded 8 research grants, totally $2.475M, including an impressive $1 million grant to researchers Ingo Helbig, MD and Ethan M. Goldberg MD, PhD of The Children’s Hospital of Philadelphia. They will not only investigate this question in a large cohort of patients, but will simultaneously create rich databases of genetic and clinical information that could be useful to answer future research questions and facilitate collaboration in the field. You can read more about this project and our other 7 grant awards at this link.
- Our 14th annual DSF Research Roundtable was held on November 30th in Orlando, Florida. You can read a recap on this year’s meeting from our Scientific Director at this link.
- DSF is working with researchers to close final gaps in the development of and access to research tools. As an example of this, we have initiated development of commercially available iPSC lines for use by academia and industry to look for potential new treatments for Dravet syndrome.
- Over 140 kits were distributed to newly diagnosed patient families, Kits include a Newly Diagnosed handbook to guide families new to diagnosis to make sure they have the tools and resources they need to properly manage their child’s care
- Over $25,000 in grants were awarded this year in life-changing assistance for patients with Dravet syndrome for durable medical goods and educational tools, such as seizure monitors, iPads, and cooling vests
- Five regional Day of Dravet workshops took place this fall, with over 500 individuals in attendance. These events brought together patients and their families to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome
- We added much needed additional online support, including a Spanish-language group and monthly Heart-to-Heart virtual chats.
- We developed our new 5-year strategic plan, which will be available early next year. It includes goals that will help to move DSF and the field of Dravet syndrome forward. With this in mind, the strategic focus areas were developed to address the three priorities of our mission: to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
We are closer than ever before to therapies that are truly disease-modifying; therapies that will address the cause of Dravet syndrome and have the potential to improve the spectrum of symptoms that patients experience. This holiday season, please consider making an end of year tax-deductible gift to DSF. No matter the size, your gift today makes a tangible difference. Thank you for your continued support, and we are excited to see what we can achieve together in 2024!
