From 2010-2015 the Spirit of Hope award was presented annually to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash. It recognized parents, siblings, and volunteers whose dedication through service to DSF is truly outstanding and inspiring.
In the past, we have honored individuals such Mike Meyerson of Absolute Motion and The Keating Family. Mike has donated countless hours to produce and oversee the many videos used to promote DSF and raise awareness of Dravet syndrome and related epilepsies. The Keating Family spearheaded Team DSF RACRE (Research and Cure Refractory Epilepsy), consisting of a series of charity runs which benefit DSF. Since its inception in 2011, Team DSF RACRE raised over $420,000 for research.
Ciara’s Butterfly Bash was named in honor of DSF Founder Lori O’Driscoll’s daughter, Ciara O’Driscoll. In January, 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). In her memory, DSF began presenting an annual Ciara’s Spirit of Hope award to community members starting in 2018. We recognize that all of our parents, siblings, and families are heroes every day, but we want to acknowledge those who go above and beyond and who have made a significant contribution for the Dravet community through their work with DSF.
You can read Ciara’s Story and learn about the Ciara’s Light Foundation at this link.