CAC2 Childhood Cancer Community News Digest (September 25-October 1)

Assorted News from the Last Week:

On September 26, 2023, the FDA approved bosutinib (Bosulif, Pfizer) for pediatric patients 1 year of age and older with chronic phase (CP) Ph+ chronic myelogenous leukemia (CML) that is newly diagnosed (ND) or resistant or intolerant (R/I) to prior therapy.

Comedian Rob Delaney found out his youngest son Henry had brain cancer. This is a story about the saddest of places life can take you, but it’s also about the biggest of loves and how to scrape up bits of joy.

“How caring for my child with cancer changed my approach to clinical care and research.

The My Pediatric and Adult Rare Tumor (MyPART) network is a group of scientists, patients, family members, advocates, and health care providers who work to help find treatments for rare cancers. The group recently launched a Spanish-language version of the MyPART website.

12-year-old brain tumor survivor Charles Robert testified in front of the U.S. Senate Finance Committee and urged committee members to support the Accelerating Kids’ Access to Care Act (S.2372 / H.R.4758; also known as AKACA).

In August, Oncoheroes Biosciences submitted two Investigational New Drug (IND) applications to the FDA, seeking permission to initiate clinical trials for two compounds in their portfolio: volasertib and dovitinib. After FDA’s thorough review and evaluation, Oncoheroes reported that both INDs have received the green light from FDA to move forward, opening the door to innovative treatment options for pediatric cancer patients.

Pediatric cancer drugs in shortage as drug supply crisis drags on. Shortages of two cancer drugs, carboplatin and cisplatin, have eased significantly in recent weeks. However, two other chemotherapy drugs that are commonly used to treat pediatric cancers: vinblastine and dacarbazine as well as methotrexate have been in short supply.

Upcoming Webinars, Online Opportunities, and Meetings:

Attend the Gabriella Miller Kids First Pediatric Research program (Kids First) public webinar featuring a Kids First Data Resource Center portal update on October 2nd 1-3 p.m. ET.  Learn more and register.

Eluna’s Camp Erin® Online is hosting a free event for teens and young adults on Saturday, October 7th called Just BE: Mindfulness & Movement.  Learn more and register.

The Focused Ultrasound Foundation and National Brain Tumor Society are sponsoring a joint webinar on sonodynamic therapy (SDT) for brain tumors on October 11 at 11:00am ET.  Learn more and register.

Register for the 55th SIOP in Ottawa, Canada on October 11-14. Experience 4 outstanding days of cutting-edge science, engaging debates, and networking with world-renowned experts.  Learn more and register.

Free educational conferences offered by Triage Cancer on cancer-related topics including navigating finances, health and disability insurance, employment rights, advocacy, and more. Next one on October 14 from 10:00-6:30 CT.  Learn more and register.

Join leaders and advocates across pediatric cancer as we come together on October 18-19 for CureSearch’s virtual 2023 Pediatric Early Development Symposium.  Learn more and register.

On October 24 at 2:00 ET, Dr. Angela Mariotto, chief of the Data Analytics Branch in NCI’s Division of Cancer Control and Population Sciences, will showcase the combined potential of NCCR*Explorer and SEER*Stat, two tools available through the CCDI National Childhood Cancer Registry (NCCR). Through a live demonstration and real-world examples, attendees will learn how to harness these resources for cancer research and surveillance. Attendees will also have the chance to ask questions during the session’s Q&A. Register.

Join top scientific experts, clinicians, researchers, NCI, childhood cancer foundations and advocates, agency officials, and many more for the Inaugural Childhood Cancer Prevention Symposium.  This ground breaking meeting will take place at Children’s National Research & Innovation Campus in Washington, DC on October 25-26th, 2023.  (Registration and meeting details forthcoming shortly).


Join the Ross K. MacNeill Foundation at their 2023 Orange Tie Gala for pediatric brain cancer research, November 4, 6:30-11:00pm CT.  Learn more and register.

Recent Recordings:

From Scientific American: “A pediatric oncologist is racing against time to send scores of sick children out of Ukraine for medical aid.”

Take Action:

A Draft Scientific Integrity Policy of the National Institutes of Health was released for public comment. The draft policy articulates the procedures and processes in place at NIH that help maintain rigorous scientific integrity practices. Additionally, the draft policy proposes several new functions to further enhance scientific integrity at NIH and throughout the biomedical research enterprise.  Comments will be accepted until November 9, 2023.

Phase 1/2 trial which aims to determine the safety and feasibility of anti-CD33 chimeric antigen receptor (CAR) expressing T cells (CD33CART) in children and adolescents/young adults (AYAs) with relapsed/refractory acute myeloid leukemia (AML). The trial will be done in two phases: Phase 1 will determine the maximum tolerated dose of CD33CART cells using a 3+3 trial design. Phase 2 is an expansion phase designed to evaluate the rate of response to CD33CART.

International Children’s Palliative Care Network (ICPCN) are excited to announce that the 2023 Digital Toolkit has been officially launched and is now available to download on the ICPCN #HatsOn4CPC website page. The #HatsOn4CPC annual campaign will be held on Friday 13th October 2023.

To help spread the word about the Childhood Cancer Data Initiative (CCDI), the National Cancer Institute has created a communications toolkit with a CCDI overview flyer, a one-pager with frequently asked questions about the CCDI Data Ecosystem, and sample social media posts and graphics.  Access the toolkit, and feel free to reference, copy, and use its content for inspiration.


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