Before Elizabeth’s diagnosis, pediatric brain cancer was not something we ever thought or worried about. After traveling Elizabeth’s journey, however, we have become passionate about this issue. Some sobering facts:
- Each year 4,200 children in the U.S. are diagnosed with a brain tumor.
- The causes of pediatric brain cancer remain a mystery, and thus there are no known preventive measures.
- Brain tumors are one of the deadliest forms of childhood cancer, and one of the costliest in terms of lost potential: Each death represents a loss of approximately 70 years in life expectancy.
- Pediatric brain tumor survivors are likely to suffer permanent physical, intellectual, and emotional challenges that will adversely impact the quality of life into adulthood.
Each case of childhood cancer is hugely tragic. Many young brain tumor victims are diagnosed early in childhood; they suffer difficult surgeries, isolating hospitalizations, and poisonous and debilitating treatments, only to succumb. The emotional strains on parents and siblings are intense, and a cancer diagnosis can be financially ruinous for a young family. Elizabeth lost the opportunity to live a full life because of her cancer. While she enjoyed 20 full years and may not have suffered as badly as some, her passing is tragic and unfair.
Early in her illness, Elizabeth was told that she was in the fight of her life — but that there were few treatment options for her disease. She knew that the only hope for victims like her would come through research. While she could not return to school or work, she did have an important purpose: to support brain cancer research to improve treatment options through better understanding of this horrific disease.
We are grateful for your support of Elizabeth’s and Dr. Greenfield’s goal of improving treatment options for young victims of brain cancer, and of unlocking the genetic secrets to these terrible tumors. Thanks to your support of Elizabeth’s Hope and the Children’s Brain Tumor Project, we have laid the groundwork for a national gliomatosis cerebri registry, which will extend our reach across the country and bring hope to every child and every family facing this horrible diagnosis. Already, every child diagnosed with a brain tumor at the Weill Cornell Pediatric Brain and Spine Center has that tumor genetically sequenced, an important first step in better understanding the disease. Soon, we hope every child in the United States who is diagnosed will become part of the project through the GC registry. Thank you again for your unwavering support of Elizabeth’s Hope.
Read the Spring 2013 Children’s Brain Tumor Project lab update from Dr. Greenfield.
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