As we approach the end of the year, we are proud to look back on our achievements. DSF started in 2009, when four parents came together looking for connection with one another and a desire to improve outcomes for their own children who had been diagnosed with Dravet syndrome. Now, 14 years later, the success of DSF and our many accomplishments is all due to our engaged patient community and loyal supporters.
In 2023, we had many exciting highlights. By the end of the year, we anticipate we will have awarded over $8M in research grants, making us the largest non-governmental funder of Dravet syndrome research, worldwide. We will also be hosting our 14th annual DSF Research Roundtable at the end of November. 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. There are many animal and cell models that allow researchers to study Dravet syndrome, and DSF is working with researchers to close final gaps in the development of and access to these 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. Our understanding of the SCN1A gene and the mutations that cause Dravet syndrome has expanded, leading to more precise diagnostics as well as uncovering how this impacts brain development and spurring novel avenues to genetic-based therapies. We continue to build on the knowledge that exists of the progression of symptoms in Dravet syndrome, and DSF is investing in efforts to more closely characterize the clinical picture with the intention that this will improve clinical recognition, outcomes, and treatments.
We continue to focus on families navigating life with Dravet syndrome. Over the last 12 months, we have sent over 140 kits to newly diagnosed patient families. These kits are designed to help families find their footing after receiving the life altering diagnosis of Dravet syndrome, and includes a Newly Diagnosed handbook to guide families new to this diagnosis and make sure they have the tools and resources they need to properly manage their child’s care. Through our Patient Assistance Grant (PAG) program, we awarded over $25,000 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, bringing the total awarded since 2009 to over $245,000! We also hosted our five regional Day of Dravet Workshops and supported patient family gatherings through our Caregiver Connect grants. We added additional online support groups, including a Spanish-language group, and began leading monthly virtual Heart-to-Heart chats. You can learn about our many important research and advocacy programs that your gift supports at this link.
Another big accomplishment this year is our new 5-year strategic plan. 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.It is because of your generosity that DSF continues to drive research, advocate for our patient community, and provide education, resources, and support for those living with Dravet syndrome. 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 and will help us to meet our $300,000 goal. Thank you for your continued support, and we are excited to see what we can achieve together in 2024!
