Advocacy
In 2006, NNCCF Board Member Shirley Folkins-Roberts was elected CureSearch Team Leader for the state of Nevada and has been traveling to Capitol Hill two times per year to meet with Nevada legislators, share stories of local families, and to urge support for increased research funding.
Each June, NNCCF representatives and northern Nevada childhood cancer families travel to Washington DC to the Reach the Day: Conquer Childhood Cancer event, hosted by CureSearch. The group joins hundreds of other survivors, patients, families and advocates from across the nation to meet with Legislators and educate them on the need to support increased federal funding for childhood cancer research.
In 2008, Reno father Matt Jensen made the trip across the country to meet with legislators and ask for their support of the Conquer Childhood Cancer Act. “Childhood cancer research funding must be maintained and increased to preserve and foster the chance for the highest and best life in every one of our children and all of us,” said Jensen. “Advances made in pediatric cancer research benefit every child diagnosed with cancer and also benefit the research and treatment of adult cancers.”
The Conquer Childhood Cancer Act was signed into law by President Bush in July of 2008. The Act authorizes $30 million annual funding over a five year period, providing resources for collaborative pediatric cancer clinical trials, research, and treatment. “Meeting Nevada families who are personally dealing with childhood cancer really affected me as I heard of their struggles but also witnessed the courage with which they battle this horrible illness. I am proud to have led the passage of this act, and I look forward to future successes in the fight against childhood cancer,” Reid said.
Northern Nevada families battling childhood cancer will directly benefit from this legislation when they receive treatments at Children’s Oncology Group (COG) certified hospitals such as Children’s Hospital Oakland and its satellite office in the Pediatric Specialty Clinic at Renown Regional Medical Center. COG is the world’s largest cooperative childhood cancer research organization that unites the best of the academic and clinical research worlds to move the most promising treatments from the lab into clinical trials. COG members follow COG defined protocols to improve the cure rates for all children with cancer.
As a local advocate for comprehensive services for childhood cancer patients and their families, NNCCF partners with local medical institutions on projects that directly benefit childhood cancer families in Northern Nevada.
The letter below was recently written by Kehl LeSourd after his beautiful daughter Kylee passed away from a brain tumor. If you would like us to include your story or a letter on why you feel childhood cancer research should be funded, please contact us.
