From 2010-2015, Ciara’s Butterfly Bash annual fundraising gala was named in honor of DSF Founder Lori O’Driscoll’s daughter. In January 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). Ciara’s courage and positive attitude in fighting Dravet syndrome made her a symbol of hope and inspiration to countless others. Her perseverance and strength has touched the lives of many. She loved being a big sister to her younger brother Aidan, and was a huge fan of the Teenage Mutant Ninja Turtles, fairies, and mermaids.
In 2018, DSF began presenting Ciara’s Spirit of Hope award in Ciara’s memory to honor persons who are making significant contributions to the Dravet syndrome community through their time, actions, talents and dedication. This award recognizes parents, siblings, and volunteers whose dedication through service to DSF is truly outstanding and inspiring. 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 significant contributions to the Dravet community through their work with DSF. This is your chance to nominate someone who deserves to be recognized for their advocacy and who inspires you! This year’s awardee will be announced on June 25 at the DSF Conference in Fort Worth, Texas.