CAC2 Childhood Cancer Community News Digest (January 16-22)

Assorted News from the Last Week:

More about the Food and Drug Administration (FDA) approval of the drug brentuximab vedotin (Adcetris) in combination with chemotherapy for the treatment of some children and adolescents with Hodgkin lymphoma.

A clinical trial has resulted in the first approval of a treatment for advanced alveolar soft part sarcoma (ASPS).

The NCI Childhood Cancer Data Initiative now includes 46 new data sets with the addition of the GEO, CLIC, PROSPR, ScPCA, and VPCC.  Another resource, “Analytical Tool,” has also been added.

Clinicians and scientists at the International PPB/DICER1 registry have just published their series of 205 children with type 1 or type 1r pleuropulmonary blastoma (PPB). PPB is the most common lung cancer in early infancy and childhood. This paper demonstrates the incredible utility of a clinical registry for rare tumor types. More information about the registry can be found at

Researchers have identified the origins of Langerhans’ Cell Histiocytosis (LCH) is a serious type of cancer-like disease that mainly affects children and can be fatal in severe cases.

Several genes that cause sarcoma have been identified in the first comprehensive genetic map of sarcomas, generated by research led by Omico, the Garvan Institute of Medical Research and UNSW Sydney. The research has wide implications for people living with sarcoma and their families — allowing detection of the cancer earlier and potentially improving survival for patients.

Why is finding new indications for existing drugs so important?

Upcoming Webinars, Online Opportunities, and Meetings:

Join the ACCELERATE group On February 9 & 10 for this hybrid meeting.  In person attendees will meet in a completely new venue in Brussels to discuss, network, share knowledge and engage with our international, multi-stakeholder community on the latest in paediatric oncology drug development.  Click here for more information.

On February 19-22, 2023, the San Antonio Pediatric Cancer Symposium (SAPCS), hosted by the Greehey Children’s Cancer Research Institute – UT Health San Antonio, in conjunction with the Mays Cancer Center, will bring together some of the most respected childhood cancer researchers from academia and industry to the Marriott Riverwalk; to discuss how today’s advances in basic and translational sciences are impacting tomorrow’s therapies and diagnoses.  Click here for more information.

SAVE THE DATE!  The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023.

Recordings of Recent Past Events:

January’s CAC2 All-Member webinar provided an opportunity for guest presenter Amy Altholz to clear up some of the confusion the IRS Form 990 can cause for many non-profit organizations.  Click to view the webinar.

Take Action:

The Coalition Against Childhood Cancer (CAC2) is recruiting an Executive Director to join a dynamic, collaborative network of nonprofit organizations, industry partners, and individuals from 39 states and nine countries, supporting and serving the childhood cancer community.  Click for more information.

The ASCO-Sponsored Patient Advocacy Booth at the 2023 ASCO Annual Meeting will provide 40 complimentary exhibits to patient advocacy organizations.  The 2023 ASCO Annual Meeting will be held at McCormick Place in Chicago, from June 2 –6. Applications for FREE booth space will be accepted between Wednesday, February 1 at 10:00 AM (ET) and Friday, February 10 at 5:00 PM (ET).  Click for more information.

The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer SurvivorshipToolkit to provide info & resources to help survivors/families.  If you have explored resources for your family, or to assist others, THEY NEED YOUR HELP!  Please add your resources using the appropriate form below:

●      Educational Guidance and Planning
●      Insurance and Financial Health
●      Managing Physical Health and Late Effects
●      Psychosocial/Emotional Health/Wellbeing
●      Transitioning to Adulthood
●      Wellness/Healthy Behaviors


The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.


Applications are now open for the brand new ALADDIN educational programme! Are you a patient advocate interested in paediatric drug development? Apply today and train in regulatory science for childhood cancer drug development:


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