June 25, 1993 - January 7, 2013
Chelsea opened her eyes every morning confronted with a new day of challenges and frustrations. Chelsea was diagnosed, at the age of five, with Friedreich's Ataxia (FA). She was born on June 25, 1993 and battled her disease daily. Chelsea 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.
Anyone who has ever met this little girl knows that she is lit from within. She had a heavenly glow about her and would want people reading this to think she's just as happy in her wheelchair as she would be on the soccer field or on a dance team. Chelsea has said that in her dreams at night, she always sees herself in a wheelchair. Yet while awake, she dreams of running and jumping in the pool. The difference between her sleeping dreams and her daydreams can be explained in a single word: "Hope."
The concept of hope is often invoked when discussing incurable or difficult-to-treat diseases, but never more poignantly than in the case of FA. That's because many researchers involved in FA studies believe that a treatment and cure are on the visible horizon -- perhaps within the lifetime of children who are currently afflicted. When Chelsea was originally diagnosed, they called FA an “orphan” disease. Now it’s found a home in the heart of our community and in the minds of prominent research scientists.
During Chelsea's life, she was not only active in fundraising but also in research. She participated in clinical trials and studies. In one study, Chelsea donated a sample of her skin cells for research. Skin cells can be reprogrammed in the lab to become induced pluripotent stem (iPS) cells, and iPS cells have become an important model for drug discovery and for research to understand the underlying causes of Friedreich's ataxia.
The Chelsea Lane Memorial Fund was created to honor Chelsea's memory and to continue her fundraising work in support of FA research. With support from The Chelsea Lane Memorial Fund, a grant titled Stem Cell Therapeutics for Friedreich's ataxia was awarded to Dr. Joel Gottesfeld at the Scripps Research Institute in LaJolla, CA.
To make an online donation, click HERE. Please click "Yes, this is an honor or memorial gift" and enter Chelsea's name.