Cannonball Kids’ cancer Foundation (CKc) announced today that report language accompanying the House of Representatives FY 2022 Labor, HHS, and Education Appropriations Bill – originally drafted by the organization – was included in the House appropriations bill that passed on July 14, 2021.
The report language approved by the House Appropriations Committee ensures all relevant data needed to assist childhood cancer researchers in developing innovative treatments for childhood cancer are made available through the National Childhood Cancer Registry and other integrated Childhood Cancer Data Initiative programs.
“The report language addresses a problem we have heard from both families and researchers fighting pediatric cancer,” said interim executive director Valerie Solomon. “The families tell us the national data does not reflect their reality of pediatric cancer, and researchers report the aggregate data collected on a national level is not truly accessible to them, particularly for very rare forms of childhood cancer. This report language puts on record the need for critical access to data for researchers doing the difficult work of finding less-toxic treatments for childhood cancer, and CKc is proud to partner with Congresswoman Stephanie Murphy to bring attention to this issue.”
“When a child receives a cancer diagnosis, the singular mission of that child’s family is to fight – and beat – the disease,” said Murphy. “I’m proud to have successfully partnered with Cannonball Kids’ cancer Foundation to advance legislative language designed to ensure that cancer researchers have all the data they need to develop treatments that are safe and effective for our youngest patients so they can survive and thrive.”
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 five 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.
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 U.S. To date, CKc has awarded $2.4 million in funding to 24 research grants, creating 593 options for treatment for children in 25 states, the District of Columbia, Canada, Scotland, and Switzerland.