CAC2 Childhood Cancer Community News Digest (August 12-18)

Assorted News from the Last Week:

The NCI Budget Fact Book summarizes the distribution of the fiscal year 2023 budget among the various NCI research programs and funding mechanisms, funding policies influencing grant awards, and comparisons with prior year allocations. Additional information on the NCI budget is accessible from the NCI home page.

A collaborative study supported by the Gabriella Miller Kids First Pediatric Research Program (Kids First) and National Institutes of Health (NIH) Common Fund, published today in the journal Nature, found that approximately 60% of the genetic changes driving T-ALL cancer cells are non-coding changes.

Researchers announced a significant paradigm shift in the understanding of T-lineage acute lymphoblastic leukemia (T-ALL), an aggressive and high-risk form of cancer, to one frequently driven by genetic changes in non-coding portions of our DNA.

While this finding isn’t exclusively about children or AYA patients, it is worth noting: new study has identified diet-derived molecules called metabolites as main drivers of young-onset colorectal cancer risk, especially those associated with red and processed meat.

This updated page explains the types of cancers that are most common in teens and young adults, tips on finding a doctor, and information about treatment. It also covers coping, fertility issues, and survivorship.

Scientists have identified novel genetic variations that influence relapse risk in children with standard risk B-cell acute lymphoblastic leukemia (SR B-ALL), the most common childhood cancer.

International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents.

Children and adolescents with cancer may have a higher risk of death if they live in areas with high levels of air pollution, according to research published in Cancer.

Upcoming Webinars, Online Opportunities, and Meetings:

Day One Biopharmaceuticals invites you to the Day One Advocacy Community Meeting on August 27, a semi-annual webinar hosted by Day One to foster communication and information-sharing with pediatric cancer advocates. Day One Chief Medical Officer Elly Barry, MD, MMSc, will review the current pipeline of clinical and pre-clinical programs for pediatric cancer and Vice President of Patient Advocacy Christa Kerkorian will review the framework for multistakeholder collaboration detailed in the recently published white paper,  Advancing Pediatric Cancer Research and Drug Development Through Multistakeholder CollaborationClick here to Register.

Lori Krause will lead Healing Hearts Wellness Workshops once a month on Wednesdays from 7- 8PM ET on August 28th. Click here for more information and to register.

Geneva’s iconic jet d’eau will be illuminated in gold on the night of September 6th to mark international childhood cancer awareness month.

Join runners and walker on September 8th for the The Great Gold Rush Race 6.0  5K run/3K walk and Family Festival at Lake Central High School! Click here for more information and to register.

Join MIB Agents in Making It Better through TURBO, the Tumor Review Board for Osteosarcoma (for clinicians only).  Click here for more information and to register.

The BrainStorm Summit for pediatric brain tumors will take place at the Mayflower Hotel September 19-21. Click here for more information and to register.

The 15th Annual Congressional Childhood Cancer Summit takes place September 19th on Capitol Hill, from 9:45 AM – 12:00 PM. Register to attend here.

Y’all are invited to “Cocktails for A Cause: You’re Wanted!” hosted by Gold Rush Cure on September 26.  Click here for more information and to register.

This year on September 30 will be the Austin Hatcher Foundation’s 15th annual Celebration of Life and Hope.  Click here for more information and to register.

The CureSearch annual Pediatric Early Development Symposium (PEDS) brings together key experts and stakeholders to address timely challenges and opportunities in pediatric cancer drug development on October 9 and 10.  Click here for more information and to register.

FDA Oncology Center of Excellence (OCE) is hosting an in-person and virtual OCE Pediatric Advocacy Forum on October 15.  Click here for more information and to register.

56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024. Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.

Past Recordings:

NCI has produced a series of brief videos for people with cancer who are experiencing eating-related challenges while undergoing treatment.

Take Action:

There’s already an amazing team of volunteers ready to make a difference at CureFest 2024! However, there are still some areas where they need additional help. If you’re able to volunteer, please click on the link to see where your support is most needed: Volunteer Sign-Up. For any questions, feel free to reach out to Kristen Alexander at

The FDA and CTTI announced the call for applications for new members of the Patient Engagement Collaborative (PEC). The PEC is an ongoing, shared forum in which the patient community (PEC members), FDA, and CTTI discuss a variety of topics such as improving communication, education, and patient engagement related to medical product regulation.

NIH recently announced a Request for Information to gather community input on additional proposed actions to accelerate the career transition of postdoc scholars into thriving biomedical research careers. Please note that feedback will be accepted electronically until October 23, 2024.  See the Open Mike Blog for additional information.

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