CAC2 Childhood Cancer Community News Digest (July 8-14)

July 15, 2024 Community News, News Digest

Assorted News from the Last Week:

Psychological and ethical issues raised by genomic testing in paediatric care pathway, a qualitative analysis with parents and childhood cancer patients.

Immuno-oncologic profiling of pediatric brain tumors reveals major clinical significance of the tumor immune microenvironment.

CAR-T therapy, which harnesses a person’s own immune cells, racks up some astonishing success stories against deadly brain tumours in children.

Researchers has identified and located a population of stem-like cells that initiates and maintains Group 3 medulloblastoma (Gr3-MB) in the developing brain. They showed that eliminating the small population of stem-like cells present in Gr3-MB tumors led to tumor shrinkage in preclinical models.

Study finds that surveillance among pediatric patients with cancer predisposition syndromes can result in the early detection of new tumors.

The latest NCI legislative report.

New research from the University of Alberta offers the hope of better long-term outcomes for survivors of childhood cancer—and the path to those better outcomes is exercise.

When Matthew Zachary was diagnosed with a rare pediatric brain cancer in 1996, he was many things. A college student. A concert pianist. A self-described “audio nerd” who could not imagine life without enjoying high-fidelity vinyl music. He believed that the experts eyeing his one-of-kind case were focused only on his cancer, and not on the 21-year-old fighting the disease.

Upcoming Webinars, Online Opportunities, and Meetings:

Rocky Mountain Vintage Racing is pleased to announce a 2-year festival series culminating in 2023 with the FV 60th anniversary. RMVR’s Race Against Kids’ Cancer (RAKC), will be at High Plains Raceway August 2-4, 2024.  Click here to 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.

Take Action:

ChadTough and My DIPG Navigator is seeking to hire a social worker to help patients and their parents navigate day-to-day challenges associated with DIPG/DMG and connect them with the help they need including emotional, medical, and financial resources. The My DIPG Navigator Social Worker (SW) will support all families in the program and work alongside the team of Nurse Navigators.  Click here for more information.

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.

Try out the monthly donation platform dedicated to childhood cancer that helps nonprofits and warrior-parents team up to raise money for research, family support, and advocacy offered at no charge by Hello Cure. 

CAC2 Member the Children’s Cancer Cause announced that the organization is accepting applications for its 2024 Survivorship Champion’s Prize. This $10,000 annual award is presented to a group, program or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers.

CAC2 Student Member Na Ouyang, MSN, RN (PhD candidate, Yale School of Nursing) is conducting her dissertation study, which focuses on exploring how clinician-parent communication influences parents’ preparation for their child’s end-of-life and then impacts parental grief in early bereavement. Click here for information and details.  Click here for the IRB Approval document.

CAC2 Innovation Council Recommendation: ArtVsCancer

Overview of the Opportunity: ArtVsCancer is a public Facebook group where AI artists create free custom art for childhood cancer patients and other children with life threatening diseases.

The Requester: Arthur van Vugt, Dutch childhood psychologist

The Type of Request: Information Sharing

The Ask: Inform parents about the existence of the group

Supporting Documentation:

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