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

Assorted news from the last week:

This video abstract breaks down financial toxicity issues for families with special health care needs.

Researchers have discovered that low-risk and high-risk neuroblastoma have different cell identities, which can affect the survival rate.

Cisplatin, a chemotherapy drug known to cause hearing loss in children is more likely to do so the earlier in life children receive it, new UBC research has found.

A new study of palliative care in pediatric oncology has found that non-White children were more likely to die in the hospital than White patients, but that the difference was in concordance with the patients’ stated end-of-life goals.

Upcoming Webinars and Online Opportunities:

The FDA Oncology Center of Excellence presents Conversations on Cancer – The Future of Childhood Cancer Drug Development: Is the Sky the Limit? Join this informal panel discussion exploring personal perspectives from survivors, clinicians, caregivers, and pediatric patient advocates on the impact of childhood cancer from 1:00-2:30 ET on September 16. Among the speakers you’ll hear from:  Elizabeth Fox, MD – Senior Vice President of Clinical Trials Research, St. Jude Children’s Research Hospital, Nancy Goodman, JD – Founder and Executive Director, Kids v Cancer, Donna Ludwinski – Director of Research Advocacy, Solving Kids’ Cancer, New York, Greg Reaman, MD – Associate Director for Pediatric Oncology, Oncology Center of Excellence, FDA, and William Yank – Three-time Leukemia Survivor | College Student.

The Ohio Department of Health has opened registration for the first annual Childhood Cancer Summit to be held ONLINE Sept 16-17. This FREE event is family-focused and includes a range of topics that are important to patients and caregivers at all stages of this experience, regardless of where you live.


  • Monday, Sept 20, 12:30pm ET – Overview Panel on Report One Year Later. Register Here.
  • Tuesday, September 21, 12pm ET – Childhood Cancer Community Webinar: CCPI One Year Later. Register Here.
  • Tuesday, Sept 21, 2pm ET – Pesticides and Childhood Cancer Prevention. Register Here.
  • Thursday, Sept 23, 1pm ET – Breaking the Mold in Cancer Care and Prevention. Register Here.
  • Thursday, Sept 23, 2pm ET – The Role of Business in Childhood Cancer Prevention. Register Here.
  • Friday, Sept 24, 2pm – 3:30pm ET – Communities Taking Action. Register Here.

ICON Pediatrics Team & CISCRP present, Advocating for Yourself or Your Child in a Clinical Trial, a 15-minute Flash webinar on September 22nd at 12PM EDT.  You can also access this month’s Flash webinar:  Treating Adolescent & Young Adult Populations, Cancer Treatment Options, and the RACE (Research to Accelerate Cures & Equity) Act for Children.

Both in-person and virtual CureFest registration is now open!  Make your plans for September 25-26.

Recent Recorded Sessions:

A public webinar, hosted by the CCDI Engagement Committee, provided an overview of CCDI, including foundational goals and vision, as well as an update on two programs within CCDI, the National Childhood Cancer Registry and the Molecular Characterization Protocol.

The second season of Sanjay Gupta’s podcast “Chasing Life” will kick off on September 7 by delving into the topic of pediatric cancer.  You can access the episode here:  Chasing a Cure.

Listen to the Pediatric Brain Tumor Foundation webinar Engaging in Advocacy: How to Amplify the Power of Your Story.  Presenters for this webinar include Sarah Milberg, Director of Government Relations and Advocacy at St. Baldrick’s Foundation, CAC2 Member Susannah Koontz at Koontz Oncology Consulting, and Rene Marsh, CNN’s government regulation and transportation correspondent.