In Palm Springs 2013 we ride in honor of Chelsea Lane
There are several active clinical trials around the world now and a lot of basic science and translational science in the pipeline to keep fueling trials until we cross that finish line to treatments and a cure. If you visit FARA’s treatment pipeline (http://curefa.org/pipeline.html), you will see numerous approaches to treatment for FA in development- a stark contrast to when FARA started and there were no trials and very little research in FA. FARA has spent the last 15 years gaining momentum in science, fundraising and partnerships, but it had to start somewhere.
When Ron and Raychel Bartek started FARA, they met Sandy and Steve Lane and their beautiful five year old daughter Chelsea who had been just diagnosed with FA. As Sandy joined the FARA Board, Chelsea went to work inspiring her home community to get involved in raising funds. Chelsea's huge smile and engaging, sweet personality inspired hundreds of people to participate in the Lane FAmily's Walk for Hope and a Cure in Orange, CA. Chelsea won the hearts of people at her school, local merchants, politicians, and celebrities. This annual event from 2000 - 2005 formed the bedrock of FARA's fundraising program, raising over $700,000, and funded a significant amount of FARA’s early scientific work bringing us closer to the treatment era for FA.
Sadly, we lost Chelsea in early January 2013. While we grieve her loss, we celebrate her legacy and her spirit by dedicating Team FARA’s ride in the Tour de Palm Springs on Saturday, February 9 to Chelsea. Team FARA will ride more than 30 people strong and has raised $27,000 (and counting)! During our ride, each team member will don a Team Chelsea placard in tribute to the work Chelsea has done and inspires us to do to get us all closer to the finish line of treatments and a cure.