CAC2 Childhood Cancer Community News Digest (November 21-27)

Assorted News from the Last Week:

CAC2 Member Mary Beth Collins explains the importance of the new FDA approval of Pedmark:  “With the FDA’s recent approval of Pedmark (an injectable formulation of sodium thiosulfate (“STS”), children are protected from cisplatin’s ototoxicity.  This development is substantial for children in treatment because it maintains their hearing, providing a better quality of life.”

Hayley Arceneaux became the youngest American to go to space last year after she spent three days in orbit on Space-X’s Inspiration rocket. She is telling her story in a new book.

Pediatric patients who receive central nervous system (CNS)-directed treatment for acute lymphoblastic leukemia (ALL) may be at an increased risk of neurocognitive problems as survivors, according to findings published in the Journal of Clinical Oncology. Specifically, patients at high-risk of developing CNS involvement and receive high cumulative doses of triple intrathecal therapy (ITT) experience worse cognitive decline than those who receive a low-risk ITT treatment.

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.

Recordings of Recent Past Events:

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. Video available soon.

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.

Take Action:

The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer Survivorship Toolkit 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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