FOR IMMEDIATE RELEASE
December 18, 2019
Contact: Karen Revels, Executive Director
LOCAL NONPROFIT ADVANCES FEDERAL EFFORTS TO RESEARCH CHILDHOOD CANCER
ORLANDO, Fla. – Orlando-based nonprofit, Cannonball Kids’ cancer (CKc) Foundation, announced today that Report Language accompanying the FY 2020 Appropriations Bill – originally drafted by the organization in partnership with Representative Stephanie Murphy and Senator Marco Rubio – was formalized by Congress’s official passing of the bill.
The Report Language will help close a gap the foundation identified in the Recalcitrant Cancer Research Act, which directs federal spending toward research on the nation’s deadliest cancers (those with a five-year relative survival rate below 50%). The Act currently only addresses adult cancers, but by including the deadliest pediatric cancers in the report language individually, the Committee will compel the National Cancer Institute (NCI) to focus research funding on those cancers as well. The committee also urged the NCI to utilize available resources to aid in the discovery of better treatments and cures to improve overall childhood cancer survival rates and requested an update on the progress of pediatric cancer research in 2021.
“This is a big win in the fight against pediatric cancer,” said Executive Director, Karen Revels. “It is simply not acceptable that in 2019 some forms of pediatric cancer have a zero percent survival rate. We hope this is just the first of many efforts to be made to prioritize federal funding for pediatric cancer research. We are so grateful for this step in the right direction.”
Among the cancers addressed in the report language, high-risk neuroblastoma is the cancer diagnosis received by Cannon Wiggins, CKc’s namesake, in 2014. The other cancers prioritized in the report are: anaplastic astrocytoma, diffuse intrinsic pontine glioma (DIPG), glioblastoma, Juvenile myelomonocytic leukemia, recurrent osteosarcoma, rhabdomyosarcoma, and diffuse anaplastic Wilms tumors. As an example, there are zero long-term survivors of DIPG, and, at diagnosis, families are told their child has less than one year to live.
Pediatric cancer remains the number one killer by disease of children in the United States. Forty-three children are diagnosed with cancer and every day at least seven children will die from cancer or the side-effects of the existing treatments. As many as 95% of childhood cancer “survivors” are likely to experience at least one late effect of treatment, with a third suffering life-threatening and chronic side effects and another third
suffering moderate to severe health problems. Pediatric cancer treatments have gone largely without progressive developments for over 20 years; for some forms of childhood cancers, the survival rate is still 0%. CKc is transforming this landscape by funding innovative, first-of-its-kind research and educating the public on the realities of pediatric cancer, both the rate of survivorship for various cancers and the impact of pediatric cancer treatments on survivors.
About Cannonball Kids’ cancer Foundation:
Cannonball Kids’ cancer Foundation’s mission is to fund innovative and accessible research for children fighting cancer to provide better treatments and quality of life, and to educate for change. Their rigorous, relationship-based, invite-only grants process ensures that 92% of CKc-funded trials are first-of-their-kind in the US. To date, CKc has awarded $2.4 million funding 24 research grants creating 593 options for treatment for children in 25 states, DC, Canada, Scotland, and Switzerland.
[EDITOR’S NOTE: The “c” in cancer in the name Cannonball Kids’ cancer Foundation is intentionally lowercase to give the word “cancer” an inferior status.]