Soon after we learned that Ciara had a seizure disorder, we decided to get involved in the epilepsy community to raise awareness and funds for research. The first event we participated in was in October 2007 when Ciara was just 2 years old. Inspired by the support of our family and friends, we continued to participate in events in honor of Ciara calling ourselves “Ciara’s Crew.”
Once the Dravet Syndrome Foundation was started, Ciara became her own advocate recruiting many people on Ciara’s Crew for Steps Toward A Cure walks and races. When Ciara was 5, I started running half marathons to raise research money for Dravet syndrome and sometimes just for fun while I raised awareness. Now I run, hike and do whatever to spread the word about Ciara’s Light Foundation and help create possibilities for other children.
Ciara’s Light Foundation is proud to continue with Ciara’s Crew in memory of Ciara. You can help improve the lives of those with special needs and life-threatening conditions by becoming a member of Ciara’s Crew at one of our events. As Ciara would say, “You can do it. You just have to believe!”
Ciara’s Crew will be participating in the Reebok Ragnar Cape Cod Relay – is an event like no other, a chance for ordinary people to achieve the extraordinary. To succeed on the two-hundred-mile course, team members must use their strengths to support each other while their own abilities are tested. They must prepare and train for the race and trust others to do the same. Ciara’s Crew members will be helping to raise awareness for those with special needs and life- threatening conditions and are encouraged to raise funds for Ciara’s Light Foundation. If you are interested in participating on the 12-member team or in volunteering, please contact Lori@ciaraslight.org. You can read more about the event at Ragnar.com.
Ciara was fortunate enough to be a Make A Wish child and had her wish to be a real princess granted with a trip to Walt Disney World when she was 5 years old. Since then, Ciara and her Mom have been invited to speak at several Make Wish events sharing the power of a wish.
The Trailblaze Challenge is a 26.2 mile hike where participants can tackle the terrain of Bear Mountain in Tompkins Cove, NY all in one amazing day. This is a hike, not a race, and is a challenge for outdoor enthusiasts. In September 2017, Ciara’s Light Foundation had six members on Ciara’s Crew who conquered the extraordinary physical test and raised over $15,000 for Make A Wish CT. We are proud to support an organization that grants the wishes of children with life-threatening medical conditions and enriches their lives with hope, strength and joy.
Join Ciara’s Crew and help spread awareness for those with special needs and raise funds to provide them with opportunities ti improve their quality of life. We can set you up with a fundraising page and send you a Ciara’s Crew shirt. Don’t want to run solo? We can help you start a team at a new event. Please contact Lori@ciaraslight.org.