Jennifer Egan, KRF’s public relations representative, wrote an Op-ed that will be sent to many press outlets. It covers the meaning and need for brain tumor research awareness during the month of May.
It’s been five years since May was designated Brain Tumor Awareness Month in New Jersey, and four years since a similar bill was passed on the national level following Senator Edward M. Kennedy’s death from brain cancer. Meanwhile, both the severity and prevalence of pediatric brain cancer have continued to increase, and it is now the leading tumor-related cause of death among children 19 and under. About 4,000 children are diagnosed with a brain tumor every year – that’s 11 children a day.
Eight years ago, I lost my vivacious, nine-year old daughter, Kortney to a brain tumor just four months after her diagnosis. I established the Kortney Rose Foundation to turn my grief into action, and to date, we have donated nearly $750,000 to the life-saving research being conducted at The Children’s Hospital of Philadelphia (CHOP). More than 94 cents of every dollar donated to KRF goes directly to CHOP. Our goal is to reach the million-dollar mark by 2016.
With Brain Tumor Awareness Month upon us, it’s an opportune time to highlight why donating to pediatric brain tumor research is so critical – the lack of federal funding. Less than four percent of the National Cancer Institute’s research funding is designated for ALL pediatric cancers, yet children make up 20% of the population. Therefore, it’s private foundations like ours that are footing the bill to overcome the devastating cancers of childhood. Without money, there is no research, and research is crucial in the battle against brain tumors. Many researchers consider a brain tumor cure to be a pathway to cures for all cancers.
It’s an exciting time in research, especially with the establishment of CHOP’s world-class Children’s Brain Tumor Tissue Consortium, a multi-institutional research program dedicated to the study of childhood brain tumors. With continued private funding, the consortium aims grow over the next few years to achieve the critical mass and number of biospecimens that will promote scientific discovery even in the rarest of children’s brain tumors. A recent tour of CHOP’s facilities confirmed for me that our money is being well spent. Board members and supporters of our foundation were treated to a demonstration of the very latest technologies that are being applied to understanding pediatric brain tumors with the goal of developing innovative diagnostic and therapeutic approaches.
This Mother’s Day, I implore all moms to consider that for every $1 spent on a patient with prostate cancer, less than 20 cents is spent on a child with any type of cancer. A patient with breast cancer has triple the research resources allocated to her when compared to a child with any type of cancer. To put it in perspective, I’ll share a quote from Dr. Eugenie Kleinerman of MD Anderson Children’s Cancer Hospital who has stated poignantly that, “Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved.”