Charlotte Rose Kelly was an otherwise healthy 2½ year old girl until June 16, 2009 when she was diagnosed with Stage IV Neuroblastoma, a rare form of childhood cancer. Her initial treatment included chemotherapy, surgery, radiation, two stem cell transplants and antibody therapy. Charlotte has relapsed. She has since endured more radiation and is being treated with chemotherapy at Children’s Hospital Boston and Dana-Farber Cancer Institute.
There is no known cure for relapsed neuroblastoma. Neuroblastoma is regarded as an orphan disease, one that does not attract funding. As such, it is left largely to the families of neuroblastoma patients to raise the necessary funds to further research to find a cure. Neuroblastoma occurs primarily in infants and young children, rarely affecting anyone older than ten years old. There are 650 new cases in the United States annually, and approximately 30% of children survive with standard, frontline therapy.
With your help, we can offer Charlotte our prayers and find a cure. The donations made to the Barr Program through the marathon challenge have already begun to make a difference in the lives of children with this disease. With Barr support in 2007, Rani George, MD, PhD, discovered that a significant number of neuroblastoma tumors contain a mutation in the gene ALK. Several successful drugs already exist to treat other types of cancer that demonstrate these same ALK mutations, and Dr. George and her team have initiated clinical trials that could result in new treatments that will improve survival for children with neuroblastoma.
For information about Charlotte, please visit her site.
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