CAC2 Childhood Cancer Community News Digest (November 28-December 4)

Assorted News from the Last Week:

“I’d like to introduce you to Josh. . .  Josh, a sound engineer, is also a childhood cancer survivor who lives with profound hearing loss. Josh has a deep love of music. It has been a constant struggle for most of his life. The side effects of chemotherapy treatment robbed him of quality of life.

High radiosensitivity of the meninges was observed in pediatric patients with cancer treated before 10 years of age, supporting the use of reduced dose whole brain irradiation and the prioritization of approaches that limit radiation exposure in healthy tissue, according to data from an international pooled case-control study.

These “five simple words” could have profound impact for pediatric brain cancer research — and for children with brain cancer and their families, according to pediatric neuro-oncologist Vijay Ramaswamy, MD, PhD, at The Hospital for Sick Children in Toronto, Canada.

Young adult survivors of pediatric cancer experience significant premature aging, according to a study published in the Journal of the National Cancer Institute.

Children and adolescents with medulloblastoma frequently suffer from neuroophthalmological sequelae, according to research presented in a poster at the Society for Neuro-Oncology 27th Annual Meeting.

Researchers have identified several genetic variants associated with increased risk of cancer in children with non-chromosomal birth defects, such as congenital heart disease and defects of the central nervous system. While the risk of developing cancer is not as high as children with chromosomal birth defects, it is significantly higher than children with no birth defects at all, and the findings may provide a basis for early detection in these understudied patients.

A research team reports finding two subgroups of Ewing sarcoma that respond differently to targeted drug therapy.

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.

Dr. Lori Wiener, head of Psychosocial Support & Research Program & co-leader of the Behavioral Health Core at NCI is featured in a SIOP webinar on December 9 that highlights women leaders in pediatric oncology!  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.

Recordings of Recent Past Events:

CAC2 Webinar Recording–Hearing Loss from Cisplatin—Multiple Perspectives on the New FDA Preventative Treatment Option

Dr. Brigitte Widemann gave the annual Anita B. Roberts Lecture – Distinguished Women Scientists at NIH on November 3rd.  Watch here.

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) hosted a virtual workshop on November 18.  The topic was Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults.   Slides here. Watch here.

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) hosted a virtual workshop on November 2 that brought together a variety of stakeholders and leaders with a breadth of scientific and technical expertise to gain common understanding of the current issues and opportunities related to electronic health record (EHR) extraction in childhood cancer research.  Watch here.

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):

  • Angela Lee (Individual CAC2 Member and CAC2 Board of Directors)

Take Action:

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 Truth 365 is looking for 125 committed volunteers to help secure an additional $125 million in federal funding for pediatric research!  On December 1, from the comfort of your home, you can make a huge impact for kids with cancer.  The goal is to show support for Gabriella Miller Kids First Research Act 2.0 through a coordinated social media campaign.  Visit the Event Page for details.

Interested in joining NCI’s #CancerGrandChallenges Advocacy Panel? In this role you would help to shape challenges, and work closely with teams.  The voice, experience, and insight of people affected by cancer is central to the work. Find out about the role:  Visit Grand Challenge for details.

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.

Help make DIPG and childhood cancer history with floor-vote scheduled for H. Res. 404, the DIPG Awareness Resolution!  Here’s all the info on it:…/  Quick link to the sign-on form:


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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