CAC2 Childhood Cancer Community News Digest (December 2-8)

Assorted News from the Last Week:

CAC2 Individual Member Jennifer Flowers writes compellingly about “When the National Drug Shortage Becomes Personal” for her.

Published in JAMA: “Stakeholder Perspectives on Randomized Clinical Trials for Children With Poor-Prognosis Cancers.” Many CAC2 Members contributed to this of how and when randomized clinical trials (RCTs) should be deployed to best meet the needs of all involved.

Reported at the ASH meeting this week:

The NCCR Data Platform is the nation’s first resource linking childhood, adolescent, and young adult records across population-based cancer registries and real-world data partners.

NPR report:  For kids with cancer, where they live has a huge impact on whether they’ll survive, and low- and middle-income countries are quite bleak.

More younger people are being diagnosed with cancer and a change in approaches to detection is called for.

More than half of children with cancer who die do so in the hospital rather than home.

Stakeholders in the cancer space have applauded the World Health Organizations (WHO) inclusion of Nigeria as a beneficiary of the Global Initiative for Childhood Cancer (GICC).

Upcoming Webinars, Online Opportunities, and Meetings:

Join Dr. Jack Shern, head of the Tumor Evolution and Genomics Section in the Pediatric Oncology Branch at NCI, for a webinar exploring the Molecular Characterization Initiative’s (MCI’s) impact on people with pediatric soft tissue sarcoma on December 10 at 1:00 pm ET. Click here to register (required).

As a training and technical assistance provider of the Centers for Disease Control and Prevention (CDC) National Comprehensive Cancer Control Program, the American Cancer Society is proud to present you a webinar on the topic of “Advocacy vs Lobbying” on December 12, at 3:00 ET. For more information and to register.

Past Recordings:

Inspiration moment (from the grandson of CAC2 Member Joe Baber): In this video, Conor Boddy from BikesOnline Racing shares what mountain bike racing means to him.

Take Action:

Congress is now working on “must-pass” legislation, and we hope that the Accelerating Kids’ Access to Care Act and Gabriella Miller Kids First 2.0 are included.  Please visit the CAC2 Advocacy Alert page to learn how you can support these community efforts this week. Each bill has a specific ask and easy-to-follow steps to make your voice heard in support of these important pieces of legislation.

The Grayson Foundation and The American Childhood Cancer Organization are partnering to bring a Childhood Cancer Awareness specialty license plate to Tennessee residents.  While Tennessee has several children’s hospital license plates, it does not have a general childhood cancer awareness license plate with a gold ribbon.  This is a simple way to honor all the young warriors across the state who are in treatment, in remission, or in Heaven.  The state requires 1,000 preorders before they will begin to produce and issue the new tag.  Will you please help us by sharing this information with your contacts in Tennessee?  If we do not reach 1,000 preorders by 6/30/25, the tag won’t happen.  The link to preorder a license tag is: https://s.acco.org/Reserve-TN-Plate

 

 

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