CAC2 Childhood Cancer Community News Digest (March 7-13)

Assorted News from Last Week:

Congress approved the fiscal year 2022 omnibus spending package on March 11.  It included great news for the childhood cancer community:  the STAR Act will receive $30M and the Childhood Cancer Data Initiative will receive $50M.


Pediatric cancer mortality and survival has only improved over the past 40 years in the United States (US) but disparities remain. However, there are often various factors that play a role including age, race/ethnicity, cancer site, and economic status, which can change the outcome or treatments of individuals.


In one of the most complicated evacuations likely ever managed from a war zone, 73 Ukrainian children suffering from cancer were rescued from besieged cities around the country and driven across the border into Poland last week.

New research has begun to unravel the mystery of why a particular form of leukaemia in infants has defied efforts to improve outcomes, despite significant improvements in treating older children. Scientists have now found subtle differences in the cell type that causes B acute lymphoblastic leukaemia (B-ALL) that may help to explain why some cases are more severe than others.

Upcoming Webinars and Online Opportunities:

Throughout March, non-profit patient support organization Living LFS raises awareness of Li-Fraumeni syndrome (LFS), a rare genetic predisposition to developing a wide range of cancers.  Half of all Li-Fraumeni syndrome cancers occur before the age of 30.  Visit to learn more about Li-Fraumeni syndrome, spread the word, and support families living with LFS!

The Pediatric Special Interest Track of SNO is pleased to present the next broadcast of the Pediatric Tumor Board Series. The broadcast entitled Embryonal tumor with multilayered rosettes (ETMR): Evidence-based recommendations for the diagnosis and treatment of this biologically and clinically heterogeneous pediatric CNS tumor will occur live on March 22, 2022, 10:00-11:30 am EST. Click here to register.

AYAs Take Chicago presents “When We Had Cancer”! Join Ann & Robert H. Lurie Children’s Hospital of Chicago, University of Chicago Medicine, The Cancer Patient at their virtual national event in for AYA Awareness Week happening on Thursday, March 31st! Panelists include survivors, caregivers, and more!  Open to all cancer patients, survivors, caregivers, friends and family, NATION WIDE.  Register:   Registration link.

You’re invited to join the Alliance for Childhood Cancer for the 11th Annual Childhood Cancer Action Days. This virtual event brings our community together to advocate for important childhood cancer issues currently before Congress.  Training will be virtually held on Thursday, April 21st at 1 p.m. EST in preparation for the virtual Action Day on Thursday, April 28th.  Register to participate:

On May 11 at 2:00-4:00 ET, join the NIH Common Fund for another public webinar.  Register to hear updates from the Gabriella Miller Kids First Pediatric Research Program (Kids First), as well as latest research findings from Kids First investigators. The Kids First Data Resource Center (Kids First DRC) will also be on hand to present updates on the latest analysis tools and resources in development within the Data Resource.

The 20th International Symposium on Pediatric Neuro-Oncology, ISPNO 2022 from 12 – 15 June 2022, and the Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) in Hamburg, Germany, from 11 – 12 June 2022.  Registration link.

Recordings of Recent Past Events:

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):

Hosts of This Week in Pediatric Oncology, Dr. Timothy Cripe and Dr. Brenda Weigel, are joined by Solving Kids’ Cancer’s patient advocates and CAC2 Members, Nick Bird & Donna Ludwinski. Nick & Donna, along with other patient advocates, recently published a groundbreaking report, “When Innovation and Commercialization Collide: A Patient Advocate View in Neuroblastoma.” Watch the video:  Read their full paper here:

Take Action:

The following Action Opportunities are sponsored by Childhood Cancer International (CCI) to aid children with cancer and their families in the Ukraine.  CAC2 is a member of CCI.

The campaign to support Ukrainian families is called the Ukrainian Childhood Cancer Emergency Fund.  All funds will be centralised on CCI Europe’s bank account and spent following a strict and transparent workframe including regular reports.

How to donate to the Ukrainian Childhood Cancer Emergency Fund:
Account holder: Childhood Cancer International – Europe
Bank: Erste Bank
IBAN: AT51 2011 1843 5194 4400


The Conquer Cancer Patient Advocate Scholarship Program provides scholarships for patient advocates to attend ASCO-sponsored Symposia and the ASCO Annual Meeting to learn of important advances in their areas of interest. Scholarships help cover travel, hotel, and registration expenses and are based primarily on financial need, advocacy experience, and current advocacy activities and involvement. Applications will be accepted until Friday, March 18 at 12:00 PM (ET).

In an effort to better support families, Ryan’s Case for Smiles is seeking caregivers to participate in a 1 hour recorded Zoom session while navigating through our site They can be any member of the family who cares for the child (Father/Mother/Grandparent/Aunt etc) and will receive a $25 Amazon gift card for their participation. We are also collecting shorter online surveys at  Email Katie at  for more information and to participate.