By Kristen Gillette
It’s been four years since the Oceanport-based Kortney Rose Foundation (KRF) successfully lobbied state legislators to designate May as Brain Tumor Awareness Month in New Jersey.
Following Senator Edward M. Kennedy’s death from brain cancer, a similar bill was passed on the national level the following year. Since then, both the severity and prevalence of pediatric brain cancer have continued to increase, and it is now the leading cancer killer among children 20 and under.
With Brain Cancer Awareness Month upon us, it is an opportune time to share the encouraging news that Stand Up to Cancer, the St. Baldrick’s Foundation and the American Association for Cancer Research awarded a $14.5 million grant to the first-ever pediatric “Dream Team.” This collaborative team will focus solely on creating new treatments for the four most deadly pediatric cancers, of which malignant brain tumors top the list. John M. Maris, M.D. of The Children’s Hospital of Philadelphia (CHOP), will lead the dream team, which comprises seven institutions: CHOP, the National Cancer Institute, the Baylor College of Medicine, Seattle Children’s Hospital, the University of British Columbia, the Hospital for Sick Children in Toronto and the University of Wisconsin. CHOP also will serve as the central hub for data analysis and new therapy development across the Dream Team consortium.
CHOP, ranked best children’s hospital in the nation by both U.S. News & World Report and Parents magazines, is the primary beneficiary of KRF’s fundraising efforts. To date, our foundation has donated $628,000 to the institution, which also spearheaded and runs the largest repository of brain tumor samples, the Childhood Brain Tumor Tissue Consortium.
Our foundation’s community-based fundraising efforts has enabled this consortium to collect more than 400 brain tumor samples, the data from which have implications for surgical treatment, radiation or chemotherapy treatment, and response for these affected children.
This is a remarkable development when you consider that brain tumors often grow in inoperable locations like the brain stem, an area that cannot be biopsied, and therefore doctors cannot design chemotherapies.
Although we still have great strides to make in terms of awareness on the national level, we’ve been fortunate to see growing support from both businesses and individuals throughout Monmouth County. With research funding from the National Institutes of Health becoming increasingly limited and competitive, private philanthropy plays a vital role for critical research.
Particularly supportive of our efforts have been Turning Point Restaurants and Monmouth Park Racetrack.
The Turning Point Restaurants have partnered with the foundation and annually hold the Great Food for a Great Cause Fundraiser at all eight locations to raise funds for research and help bring our cause to a larger audience. Monmouth Park hosts our annual signature event, Kortney’s Challenge 2 mile FUN Run/Walk, and the subsequent Day at the Races Picnic event, which is scheduled this year for Aug. 11. We are very grateful to all of our sponsors. They afford us more generous donations to research due to their support.
We thank all of our donors for channeling the spirit and energy of my daughter, Kortney Rose, who we lost to a childhood brain cancer in 2006, just five months after she celebrated her 9th birthday.
With 11.5 children per day diagnosed with a brain tumor and a five-year survival rate of less than 20 percent, we remain committed and look to our community for continued support to raise funds for research and education related to the treatment and cure of pediatric brain tumors.
Kristen Gillette is the founder of The Kortney Rose Foundation, a 501(c)(3) charitable organization.
Visit www.thekortneyrosefoundation.org or like us on Facebook to help us Get Brain Tumors Off Kids’ Minds.