CAC2 Childhood Cancer Community News Digest (October 3-9)

Assorted News from the Last Week:

Helping kids manage fear and anxiety when they have a serious illness

Public sharing of pediatric brain cancer presentation prepared for House Health Subcommittee supporting H. Res. 404

New findings show more than 32,000 newly diagnosed adolescent and young adult (AYA) cancer patients may lose or face compromised fertility preservation care each year due to legislation that has been enacted or is expected to be enacted in some states.

Despite decades of medical advances, children who develop the pediatric eye cancer retinoblastoma often lose their vision or an eye due to a lack of specific, targeted therapies and a poor molecular understanding of the cancer. Now researchers have discovered that a molecule — estrogen-related receptor gamma, or ESRRG — becomes hyperactive and promotes tumor cell survival in retinoblastoma. Blocking ESRRG, the team reported, kills retinoblastoma cells.

Cancer is still surprising us.

The NCI Childhood Cancer Data Initiative’s Molecular Characterization Initiative and MyPART’s Natural History Study

Monica M. Bertagnolli, M.D., started as the 16th director of the National Cancer Institute (NCI), part of the National Institutes of Health (NIH) last week.

Upcoming Webinars, Online Opportunities, and Meetings:

CureSearch Pediatric Early Development Symposium: Leveraging Big Data to Advance Pediatric Clinical Trials, on October 12-14.  Details and Registration Link.

Join The Leukemia & Lymphoma Society on Wednesday October 19 for a childhood cancer community virtual Day of Action! Interested organizations will be participating in a flurry of activities urging congress to pass both the Childhood Cancer STAR Reauthorization Act and the Accelerating Kids’ Access to Care Act(AKACA) into law before the end of the year.  Contact Matt Marks (for details.

First International Pediatric Cardio-Oncology Conference, October 21 and 22.  Details and Registration Link.

Recordings of Recent Past Events:

United Therapeutics sponsored an open conversation with patients, parents, and an expert mental health clinician dealing with emotions, learning to be vulnerable, finding the strength to fight, figuring out how to cope together, and much more.

The NCI sponsored webinar series, Novel Chemical Approaches for Targeting Fusion Oncoproteins featured a webinar entitled “Targeted Oncoprotein Degradation for the Treatment of Pediatric Cancers.”  It was delivered by Dr. Zoran Rankovic from St. Jude Children’s Research Hospital. The recording of this webinar is now available and can be accessed by the following link: Novel Chemical Approaches for Targeting Fusion Oncoproteins 9/23/2022 (

The White House Office of Science and Technology Policy (OSTP) hosts a forum in recognition of National Childhood Cancer Awareness Month on Friday, September 23rd.  This convening brought together patients, caretakers, oncologists, and administration officials, who provides updates on progress of several key initiatives and served as an important opportunity for the community to make their voices heard.  Watch the recording.

NCI recently hosted a webinar offering a comprehensive update on implementation activities related to the research provisions in the Childhood Cancer STAR Act, which included updates on biospecimen collection and biobanking activities and on survivorship research and reporting activities.  Watch the recording.

Take Action:

From our friends in the DIPG community:  Please help us make history for children with cancer and push H. Res. 404 over the finish line.…/2022/09/0-Sept15_22Congress.pdf

The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.

If you or any families you know who have been impacted by pediatric brain cancer and affected by Hurricane Ian  and need support, Please message Pediatric Brain Tumor Foundation, email or call 445-895-9078 to speak with our Family Support Manager Jenn Kelley.

Children’s Cancer Cause Advocacy updated and revised its Toolkit earlier this month and it’s now available now for digital download. This guidebook will give you the tools you need to become an informed, effective advocate for kids with cancer and childhood cancer survivors.