rideATAXIA has become a powerful force in the effort to treat and cure FA. Hundreds of people come out to each ride to participate, challenge themselves, and contribute to the science that will treat and cure FA.
As the momentum continues to build, I am constantly reminded of the people who were there in the beginning before there was momentum to build on.
The power of community is incredible. It is awesome to be encouraged by each other to raise funds or participate in research.
But what happens when you’re diagnosed before that community has taken shape? It takes a special kind of person to stare down a dark and lonely situation and still take action.
That’s why rideATAXIA SoCal is dedicated to the memory of Chelsea Lane.
Chelsea was diagnosed with FA in the very earliest years of FARA, before clinical trials, before there was the connected and robust FA community we know today.
Chelsea was diagnosed in 1998 at the age of 5 and battled her disease daily. She eventually became legally blind and could not do any activities most of us take for granted, such as self-feeding, bathing, brushing her teeth, brushing her hair, or dressing herself. This disease robbed Chelsea of her independence, her dignity and her pride. Remarkably, despite the grim scenario painted above, Chelsea was cheerful, happy and loving.
Because of this disposition people loved to be around Chelsea and she brought happiness wherever she went.
One of the first FARA fundraisers took place in the Los Angeles area. It was a walk, organized by Chelsea’s family. They got in touch with KTLA Television in LA and the station flew Chelsea to the event in a helicopter accompanied by their most beloved TV anchor. Hundreds of participants raised over $100,000 that day and the Southern California effort to Cure FA was born. Many people have come after her and were encouraged by the momentum Chelsea helped initiate - myself included.
Chelsea’s battle with Friedreich’s ataxia ended on January 7, 2013 but her memory lives on. At rideATAXIA SoCal 2018, Team Chelsea’s team captain is Chelsea’s Mom, Sandy Lane who
was on the Founding Board of Directors of FARA and continues as an advisor to the Board.
Sandy is starting a clothing line called Sleep With the Angels in memory of Chelsea. Sleep With the Angels generously sponsored the ride and their logo can be seen on the SoCal event site and on the back of the event T Shirt.
In memory of Chelsea, each rideATAXIA SoCall jersey will have a small memorial inside the collar.
Thank you, Chelsea for helping to start the fundraising momentum that we carry forward today.