CAC2 Childhood Cancer Community News Digest (October 24-30)

October 31, 2022 Community News, News Digest

Assorted News from the Last Week:

CBS “Sunday Morning” contributor Kelefa Sanneh talked with CAC2 Members Kari and Tom Whitehead and their daughter Emily about how they defeated her cancer and were joined by Dr. Siddhartha Mukherjee, a leading cancer specialist and author of the new book, “The Song of the Cell: An Exploration of Medicine and the New Human.”

CAC2 Member Cindy Campbell and her family spoke with NBC News’ Tom Llamas to tell the story of how the Campbell family has spent the past decade honoring their son’s life and legacy through a foundation in his name to raise funds for pediatric cancer research.

CAC2 Member Gwen Nichols from the Leukemia & Lymphoma Society wrote an article about childhood cancer survivors for STAT.  “Treatments for pediatric cancers work well, but they come at a steep cost. Survivors of childhood cancers are twice as likely as their peers to develop at least one chronic health condition by age 50 and, on average, have 17 of them. For the youngest people with cancer, achieving remission is a major milestone to be celebrated, but it isn’t the end of their health problems; it’s often the beginning of a new journey.”

The malignant brain tumor type medulloblastoma can become resistant to therapy which can cause relapse. Researchers have discovered a certain protein that makes tumor cells resting and insensitive to radiation treatment. The research group hopes that the results could eventually lead to better treatments for children that have the highest risk to develop relapses.

Recently published research found that blood transfusion is associated with adverse outcomes — including infection and higher rates of tumor recurrence — in pediatric solid tumor oncology patients following surgical removal of the tumor.

An FDA advisory committee voted unanimously against recommending approval of the radiolabeled monoclonal antibody 131I-omburtamab for progressive neuroblastoma with central nervous system (CNS)/leptomeningeal metastases.

In a study of childhood cancer survivors, researchers in the Radiation Epidemiology Branch (REB), observed that children who received radiotherapy had an increased risk of developing meningioma, cancer of the membranes that surround the brain and spinal cord (meninges).

Upcoming Webinars, Online Opportunities, and Meetings:

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) will host a virtual workshop on November 2, 10:00-3:00 ET.  The topic is The Importance of Electronic Health Record (EHR) Data in Clinical Care and Research.  Insights from the workshop will help drive future CCDI EHR activities.  Details and Registration Link

Leukemia & Lymphoma Society invites you to Caregiving Over Coffee on November 7 at noon ET.  Discussion will include:

  • Physical, social and emotional challenges for caregivers
  • Self-care for caregivers
  • Long-distance caregiving
  • Quality of life for both caregivers and patients

Triage Cancer webinar: Understanding Long-Term Disability Insurance Webinar, November 10 at 1:00pm ET. This webinar on Understanding Long-Term Disability Insurance will provide information on making a long-term disability insurance claim. The webinar will also address steps that employees can take while still working but considering taking time off, tips for submitting a long-term disability claim, how short-term and long-term disability interact, and what to do if a claim is denied.  Details and Registration Link

Recordings of Recent Past Events:

Children’s Cause Conversations Series program recently talked to Dr. Greg Aune, a pediatric cancer survivor and pediatric oncologist with Greehey Children’s Cancer Research Institute in San Antonio, Texas. Dr. Aune discusses some of the top takeaways from our recent externally-led Patient Focused Drug Development on Reducing Cardiac Late Effects in Childhood Cancer Survivors, including the importance of giving families a platform to share their powerful stories.

NCI sponsors a webinar series called Novel Chemical Approaches for Targeting Fusion Oncoproteins. The last three webinars have now been posted. This includes the following:

October 7: Tomek Cierpicki, Ph.D., University of Michigan; Development of NSD1 Inhibitors Targeting NUP98-NSD1 Fusion Leukemia Presentation Link: Novel Chemical Approaches for Targeting Fusion Oncoproteins-10/07/22-Edited (vbrick.com)

 October 14:  Matthew Disney, Ph.D., UF Scripps Biomedical Research; Ribonuclease Targeting Chimeras for the Selective Targeting of Oncogenic RNAs Presentation Link: Novel Chemical Approaches for Targeting Fusion Oncoproteins 10/14/2022-Edited (vbrick.com)

October 21:  Paul Workman, PhD, FRS, FMedSci, Institute of Cancer Research, London UK; Discovery of Clinical Cancer Drug Candidates by the Target-Based Approach and Phenotypic Screening Presentation Link: Novel Chemical Approaches for Targeting Fusion Oncoproteins 10/21/2022-Edited (vbrick.com)

Take Action:

The NCI-Cancer Research UK Cancer Grand Challenges initiative brings together international research teams to tackle cancer’s toughest challenges. The first round of challenges funded through this partnership were announced in June 2022, with four teams receiving awards totaling $100 million over 5 years. NCI and Cancer Research UK are now preparing for the next round of challenge opportunities, and we need your ideas – submit them online now through November 28, 2022. For those looking for input on what to submit, the web portal provides additional guidance for developing suitable ideas for consideration.

My DIPGNavigator is hiring a Nurse Navigator (NN) who will provide one-on-one support (via virtual chats, phone calls, texts, email, etc.) to families navigating a DIPG/DMG diagnosis, with an emphasis on educating and connecting the family to appropriate medical experts. In addition to supporting the family through education and connection, the NN will direct the family to other resources the family may need during their DIPG/DMG journey (e.g., financial assistance, tumor donation resources, etc.).  Click for More Information

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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