CAC2 Childhood Cancer Community News Digest (November 6-12)

November 13, 2023 Community News, News Digest

Assorted News from the Last Week:

World Health Organization joins forces with St. Jude Children’s Research Hospital and other key countries to coordinate vital humanitarian action amidst ongoing conflict in the Gaza strip.

CAC2 Member Blog by David Achey (Wit You Against Childhood Cancer): “Both during and after treatment, nutrition plays a critical role in supporting the health and well-being of childhood cancer survivors and caregivers.””As a younger physician, I cannot yet seem to curb the feelings of guilt that bubble up when one of my patients dies. In the ever-changing landscape of pediatric oncology, will I always wonder if there was a miracle cure hidden away somewhere that I didn’t find?”

Representatives Ami Bera, M.D. (D-CA) and Mike Kelly (R-PA) introduced the Data for Pediatric Brain Cancer Act of 2023, bipartisan legislation to strengthen the collection and use of real-world data to support pediatric cancer research, and to improve treatments for children facing this devastating disease.

Symptom clusters assessed in pediatric patients with acute lymphoblastic leukemia (ALL) at different stages of chemotherapy demonstrated a degree of constancy and change, offering valuable information for healthcare providers as they work on developing sustained symptom management approaches for these patients.

Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer.

A panel discussion, coordinated by National Community Oncology Dispensing Association (CODA), focused on understanding the current landscape of oncology drug supply, characterizing the substantial effects of the shortage on clinical practice and patient care, and anticipating strategies for handling future drug shortages.

Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children.

Upcoming Webinars, Online Opportunities, and Meetings:

Triage Cancer will offer a webinar on Cancer Caregivers on November 15 at 11:30 ET about the rights of caregivers at work, how to replace lost wages while acting as a caregiver, and practical tips to support caregivers.  Learn more and register.

CAC2 Member A Moment of Magic will host this virtual event on November 15 at 7:00 ET focused on nurturing self-acceptance and empowerment. Explore a path to body neutrality, share experiences, and cultivate confidence in a safe and supportive space. Learn more and register.

Recent Recordings:

Democracy Now:  As the U.N. secretary-general repeats his call for an immediate ceasefire, the death toll in Gaza has topped 10,000, including 4,000 children. Democracy Now speaks to an American doctor who just left Gaza and the founder of the Palestine Children’s Relief Fund, which runs the only pediatric cancer unit in Gaza.

CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):

Take Action:

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.

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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