Ciara’s Spirit of Hope Award Nominations Now Open!
Nominationsare 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.
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council.
She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF.
Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.