We invite you to nominate an individual whose dedication and volunteerism with DSF has been truly outstanding and inspiring!
From 2010 to 2015, the Spirit of Hope Award was presented at DSF’s annual gala, Ciara’s Butterfly Bash, named in honor of DSF Founder Lori O’Driscoll’s daughter, Ciara, who was diagnosed with Dravet syndrome. Past recipients have included parents, siblings, and volunteers who generously contributed their time and talents to advance DSF’s mission. In January 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy).
Ciara was an adventurous, loving, and kind-hearted girl who inspired everyone around her with her positive attitude, despite the challenges of living with Dravet syndrome. In her memory, DSF established Ciara’s Spirit of Hope Award in 2018, presented at our biennial conference to honor community members who go above and beyond in supporting the Dravet community. While all of our parents, siblings, and families are everyday heroes, this award recognizes those whose contributions through DSF have been exceptional.
You can submit a nomination for a deserving community member through May 8, 2026. The 2026 award recipient will be announced live on Friday, June 26, at our biennial conference in Orlando, Florida. We also encourage you to read Ciara’s Story and learn more about Ciara’s Light Foundation.
