CAC2 Childhood Cancer Community News Digest (October 25-31)

Assorted news from last week:

Save the Date:  CureFest 2022 will be held Sep. 24 and 25 in Washington, DC.

The World Health Organization (WHO) has published the consensus of a set of indicators to evaluate and monitor the development of palliative care worldwide. The report was presented last week at the 17th Palliative Care World Congress in a joint symposium of the WHO and the European Association for Palliative Care.

Approximately 20% of pediatric patients with cancer infected with COVID-19 experienced severe illness, according to data published in The Lancet Oncology. Furthermore, deaths due to the infection were proportionally higher in this patient population compared with the general pediatric population, providing evidence that children with cancer are at higher risk of developing severe illness from COVID-19.

The use of risk stratification in children and adolescent and young adult (AYA) patients with synovial sarcoma is an essential approach to appropriately tailoring local and systemic therapy and avoiding overtreatment.

Two-thirds of respondents to a COTA survey reported that clinical trials for cancer take too long to yield results, and more than 80% of respondents familiar with the clinical trials process erroneously believed that clinical trials include sufficient real-world data from diverse racial, ethnic and socioeconomic groups. Additionally, about 85% of survey respondents stated their willingness to share their anonymous data if requested by their physicians, and 86% believed that oncologists should talk to patients about the value of sharing data.

The National Cancer Institute and Cancer Research UK sponsors the Cancer Grand Challenge each year.  This year the scientific committee narrowed the 169 innovative ideas down to a shortlist of just 11 teams, who will now compete for a share of £80m.  A newly launched childhood cancer research initiative called the “Virtual Child” is a finalist. This is a global project that harnesses the power of technology to transform the treatment of pediatric solid tumors.  CAC2 Member Gavin Lindberg (EVAN Foundation) is a parent advisor to this project which welcomes feedback from the childhood cancer community to inform the work of the team. Please visit to learn more and provide your input using the “Let’s Talk” tab.

Upcoming Webinars and Online Opportunities:

You can now register for the Neuroblastoma Parent Global Symposium 2021 at .  Hosted over two days (Friday & Saturday, November 5 & 6), this FREE virtual event will feature live and pre-recorded sessions and networking opportunities for families via conversation rooms on specific topics of interest. 

The National Cancer Institute (NCI) is hosting the Childhood Cancer Data Initiative (CCDI) Annual Symposium on November 9, 2021. CCDI is building a community centered around childhood cancer care and research data. Through enhanced data sharing, we can improve our understanding of cancer biology to improve preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer. The purpose of the symposium is to provide an update on activities to-date, and to exchange information to continue the momentum of progress from the first two years of CCDI.  Registration is required to attend the virtual meeting, complete the form under the Registration tab.

CAC2 Ethics Think Tank presented a paper entitled Cultivating Ethically Sustainable Relationships with Stakeholders When Non-Profits Fund Pediatric Cancer Clinical Trials at SIOP.

Greg Simon, former President of the Biden Cancer Initiative, describes the recent progress made in patient-friendly clinical trials and the need to retain these changes to increase diversity and equity and to lessen the burden on patients wherever possible.

CAC2 Member Ellyn Miller (Smashing Walnuts), spoke powerfully at the Energy and Commerce Committee about the bipartisan Gabriella Miller Kids First Research Act 2.0 bill in her daughter Gabriella’s memory and in an effort to bring greater resources to the fight against childhood cancer.

CAC2 hosted their October All-Member webinar, Finding Families to Serve, on October 20.  Panelists included CAC2 Member Kim Buff (Momcology), Heather Held (Pediatric Brain Tumor Foundation), and Robyn Dillon (Children’s Hospital of Richmond).  They will share information on their successes in connecting with children and families who can benefit from an organization’s support services.

CAC2 member Janet Demeter (Jack’s Angels)  hosts Childhood Cancer Talk Radio.  Follow that link to access past episodes. Caitlyn Barrett, National Director of Research and Programs for CureSearch and CAC2 Board member recently appeared to discuss their collaboration with the Scott Carter Foundation in supporting a new clinical trial for DIPG.