ORLANDO, Fla. – Orlando-based nonprofit, Cannonball Kids’ cancer (CKc) Foundation, announced today that Report Language drafted by the organization and submitted to the House Appropriations Committee by Representative Stephanie Murphy was adopted on May 8, 2019, along with the FY 2020 Labor, Health and Human Services and Education Appropriations 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 Congresswoman Stephanie Murphy’s strong support and know that her prioritization of this issue will have a positive impact on kids battling cancer.”
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 has taken a “disruptor” approach to addressing these issues in pediatric cancer by funding primarily 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 (CKc) 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. CKc was founded in June 2014 by Michael and Melissa Wiggins, parents of Cannon Wiggins, who was diagnosed with Stage IV high-risk neuroblastoma when he was just 20 months old. During Cannon’s treatment, Michael and Melissa learned very little time, effort and funding is devoted to finding cures for children’s cancer compared to adult cancers, and as a result, children are unnecessarily and unjustly lost. CKc aims to stop the tragic reality of children suffering and dying because of the lack of research in the world of children’s cancer treatments.
[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.]
