Nominations are now open for the 2020 Ciara’s Spirit of Hope Award! I hope you will consider nominating an individual whose dedication through their volunteerism to DSF has been outstanding and inspiring to you. 

From 2010-2015 the Spirit of Hope award was presented to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash, which was named in honor of DSF Founder Lori O’Driscoll’s daughter, Ciara, who was diagnosed with Dravet syndrome. In the past, the award has been given to parents, siblings, and volunteers who have donated their time and talents to help further the mission of DSF.  In January 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). 

Ciara was an adventurous and loving girl who was kind to everyone she met. Despite the limits created by her having Dravet syndrome, she never complained and she had an infectious positive attitude that inspired those around her. In her memory, DSF began presenting Ciara’s Spirit of Hope Award to community members in 2018 at our biennial conference. 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 nominate a deserving community member  today and our 2020 awardee will be announced live on Saturday, June 20, at our biennial conference in Fort Worth, Texas. And, please take the time to read Ciara’s Story and learn more about Ciara’s Light Foundation.