CAC2 Childhood Cancer Community News Digest (January 23-29)

Assorted News from the Last Week:

Reporting by the Bureau of Investigative Journalism, in partnership with STAT, reveals that at least a dozen brands of asparaginase for treatment of ALL have been proven to be poor quality.  Ten of them are still on the market. In some cases brands fell well below the standard needed to treat cancer. Many have also been found to contain contaminants such as bacteria that could be harmful to patients.

The National Comprehensive Cancer Network (NCCN) clinical practice guidelines for adolescent and young adult oncology have been updated to include Pedmark, a sodium thiosulfate injection, to assist in reducing the risk of ototoxicity associated with cisplatin use in pediatric patients with localized, non-metastatic solid tumors.

Young adult survivors of childhood cancer have elevated risk of experiencing loneliness.

The world’s first international clinical guidelines to help prevent and treat heart complications in children undergoing cancer treatment have been created.

Summary of the genetic, epigenetic, and cellular heterogeneity of pediatric high-grade gliomas with potential paths forward for epigenetic highlighted.

2023 update to the clinical practice guideline (CPG) for the empiric management of fever and neutropenia (FN) in pediatric patients with cancer and hematopoietic cell transplantation recipients.

Researchers estimated the travel time to continental U.S. pediatric cancer care settings and identified potential disparities among U.S. children and AYAs.  Most children and AYA patients were estimated to travel less than 30 minutes.  The American Indian or Alaska Native pediatric population, residents of rural areas and areas with high deprivation levels, and those in the South and Midwest had the longest median travel times.

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.

The International Replication Repair Deficiency Consortium (IRRDC) is hosting its 3rd educational webinar on Constitutional Mismatch Repair Deficiency (CMMRD) syndrome on February 15, 2023 from 1:30 -3:00pm ET. 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.

Survey respondents needed: Understanding emotional distress in childhood survivors of cancer – posted by an NHS psychologist conducting this research with the University of Liverpool and Alder Hey Children’s Hospital. Participants: 12 – 18 yrs & parents

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.


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