CAC2 Childhood Cancer Community News Digest (March 14-20)

Assorted News from Last Week:

National Cancer Institute‘s Childhood Cancer Data Initiative launched the Molecular Characterization Initiative to foster data sharing through comprehensive cancer analysis. This Initiative is a national collaboration with the Children’s Oncology Group (COG) and others to provide state-of-the-art clinical and molecular characterization testing. At this time, the initiative is open to children and adolescents and young adults who are newly diagnosed with central nervous system cancers and receiving care at COG-affiliated hospitals.  More information is available:

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.

study, published in the Journal of the National Cancer Institute, suggests that exposure to medication-associated phthalates may contribute to the development of some childhood cancers, and that minimizing exposure to phthalates may help prevent some childhood cancers in the future.

The FDA has granted approval to the fixed-dose combination of relatlimab plus nivolumab (Opdualag) for the treatment of adult and pediatric patients who are 12 years of age or older and who have unresectable or metastatic melanoma, according to an announcement by CAC2 Supporting Organization Member Bristol Myers Squibb.

A new study by researchers at Children’s Hospital of Philadelphia (CHOP) shows that linking a tumor-killing prodrug to a macromolecular carrier of the Poloxamer family improves retention of the drug in treatment-resistant neuroblastoma tumors, leading to rapid tumor regression and lasting therapeutic responses in several preclinical models.

A researcher has found, through extensive data analysis, that the youngest patients with brain tumors — those ages birth to 3 months — have about half the five-year survival rate as children ages 1 to 19.

Genomic sequencing of tumors from pediatric cancer patients experiencing a relapse enabled 107 patients to receive an appropriate matched therapy that is not the standard of care, according to data from the international clinical trial MAPPYACTS.

The NCI-COG Pediatric MATCH Clinical Trial page has been updated to reflect a recent change in recruitment status. NCI-COG Pediatric MATCH is an international cancer treatment clinical trial for children, teens, and young adults, aged 1 to 21, that is testing the use of precision medicine for childhood cancers.

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.

Ricardo Garcia (CAC2 Member and co-founder of Oncoheroes Biosciences), and Thomas Gad (co-founder of CAC2 Member Y-mAbs Therapeutics, Inc.), both dads touched by #childhoodcancer, will speak at a Training Capsule event sponsored by  i4KIDS on March 29th, 10:00-11:30 am EDT.   Free Inscription & Info:

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.

The EVAN Foundation (CAC2 Member) is proud to announce the launch of the Evan Lindberg and Erik Ludwinski College Scholarship Program for Childhood Cancer Survivors. HS seniors can apply for awards of $2,500 a year, renewable annually for 4 years of undergraduate coursework. Applications accepted from March 15th – May 1st. Two scholarships will be awarded in 2022 with winners announced July 1st.  Click for more information and to apply.

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