Dear Friends, Research is at the heart of our mission and how we get closer to a cure every day. Thanks to the work of incredible researchers, we continue to make breakthroughs that improve patient treatment, provide better options to families, and help individuals with Dravet syndrome achieve a better quality of life. Everything we do centers around research. That is why we are excited to announce our 2023 research grant opportunities. This year, we have several exciting updates to our yearly grant programs and a special one-time Request for Applications that propose to address the topic of broader genetic impacts on diverse outcomes in individuals with Dravet syndrome. For this special grant call, we will consider budget proposals of up to $1,000,000 (including direct and indirect costs) over a 3-year timeframe. Learn more about the details of these grants, essential criteria for proposals, and application instructions here. Thank you, Dravet Syndrome Foundation | |
June is Dravet Syndrome Awareness Month and this is your chance to purchase brand new shirts with our new slogan: Community. Research. Progress. Every shirt purchased will send money back to the Dravet Syndrome Foundation to help us continue our mission and support our community. Order yours by May 12 to make sure you get it before awareness month kicks off! | |
 | Thank You We'd like to take a moment to thank one of our very own patients, Bridget Fullam, for her recent fundraising efforts! Bridget is an 18-year-old living with a Dravet syndrome diagnosis from Montvale, NJ. She recently helped us secure $100,000 through two grants from The Marilyn Lichtman Foundation for our research grant program. We are so appreciative of her continued commitment to our community and for being a voice for fellow patients. Learn more about Bridget's story here. | | |  | Upcoming Event Steps Toward a Cure: Washington is coming up soon! This fundraiser will take place on Sunday, June 4, beginning at 10 a.m. The event welcomes anyone who can attend to join us as we walk, run or stroll together to raise funds for the Dravet Syndrome Foundation. For those too far to make it, consider supporting the event online by sharing the details or making a donation. If you'd like to participate in person, consider hosting a Steps Toward a Cure in your area. | | |  | New Webinar Next up in our 2023 DSF Caregiver Educational webinar series is: Inspiration & Preparation for Traveling with Dravet! Join us on Monday, May 22 at 4 p.m. PT | 5 p.m. MT | 6 p.m. CT | 7 p.m. ET for a panel discussion to learn how to confidently travel with Dravet, whether for business (i.e., medical appointments), or pleasure (i.e., family vacations). Learn more and register to attend here. | | | | | |
News and Events - Heart to Heart - Our May Heart to Heart session is coming up fast! Consider joining our community for this virtual meeting on Monday, May 29, as we connect and have thoughtful discussions together. Register here.
- Platinum Seal - We just earned our 2023 Platinum Seal from Candid! See the exciting work we have to share on our Guidestar profile here.
- Caregiver Connect - Caregiver Connect is a program designed to help families deal with the many emotions of being a caregiver to a child with a rare disease. Learn more about how this tool can help you here.
- Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
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