Our Impact

Research Funding

2015

$5,000  – Dr. Sweet-Cordova, Stanford University, who is investigating appropriate drugs for various genetic mutations found in pediatric bone cancers.

$5,000  – Dr. Federman, UCLA, who is researching the inhibition of the PD1 checkpoint pathway as a means of revving up the immune system to combat bone cancers.

Thank you to these amazing researchers for keeping hope alive for so many families!

Special thanks to our major donors:  Brianna Cupps and Family, and Placer County Youth Orchestra

 

Awareness

Roma has played a lead role in the drafting of the childhood cancer section of California’s Comprehensive Cancer Control (CCC) Plan for 2016-2020! (Learn more about California’s CCC plan here, and about the National CCC program here.) California’s current CCC plan (2011-2015) did not include any reference to childhood cancer. When she learned about this early in 2013 at a meeting of a few childhood cancer advocates, she decided to pursue the issue.

In March of 2014 she began having a discussion with the California Dialogue on Cancer (CDOC), the cancer coalition which develops and implements California’s CCC plan, about the feasibility of including childhood cancer in the upcoming revision to California’s CCC plan. After a couple of emails, she found someone sympathetic to the childhood cancer cause, and was also happy to hear that the CDOC was at that time discussing content for California’s CCC plan revision. The request to include childhood cancer would be raised during upcoming meetings.

Early in June 2014 she was elated to be informed that childhood cancer would indeed be included in the revision to California’s CCC plan, and those interested in being involved could join the CDOC at their meeting that month for preliminary discussions!

The next twelve months following the meeting were spent discussing, drafting and editing the childhood cancer content, including an overall goal, several objectives and strategies, and a narrative. We are grateful for the guidance and strategic input from the CDOC; data analysis from the California Registry; deliberations on content and language especially with Dr. Bradley Pollock and Robyn Raphael; the additional expertise of Dr. Mike Amylon, Dr. Eric Tai, Dr. Malcolm Smith, Dr. Lionel Chow and Danielle Leach; and insights from childhood cancer advocates in Tennessee and Colorado (two states which have significantly included childhood cancer in their CCC plans).

Due to space limitations, a lengthy review of childhood cancer was not possible, but we are nonetheless thrilled with the content that fit in the space allotted. Final strategies included in the childhood cancer section of California’s revised CCC plan relate to research funding, quality of life issues, treatment summaries, survivorship care plans, the education of primary care physicians and school personnel, and clinical trials. California’s CCC plan for 2016-2020 will be published in 2016 and will be available on CDOC’s website.

Although this project was labor-intensive, it is one we felt passionate about pursuing. In any discussion about the burden of cancer on public health, childhood cancer needs to be included. How could it not be, as the number one cause of death due to disease for kids?

 

Does Your State (or Territory or Tribe) Include Childhood Cancer in its Cancer Plan?

Search “childhood cancer” on the Center for Disease Control and Prevention’s CCC plan search page to find a list of all CCC plans that include childhood cancer. Our search turns up only 23 states and 4 other territories or tribes. Some include fairly extensive childhood cancer information, but others have very limited information. To simply browse through all the available CCC plans, you can find a list on this page.

Remember, planning for the revision to your state’s CCC plan will probably begin a couple of years before a revision will be published – so don’t wait too long to inquire about either adding a childhood cancer section, or revising the existing childhood cancer information. Please feel free to reach out to us if we can be of any assistance!