CAC2 Childhood Cancer Community News Digest (October 31-November 6)

Assorted News from the Last Week:

November is National Family Caregivers Month.  The President Joe Biden honored family caregivers for all they do for the nation with a Presidential Proclamation. “No one should have to choose between a paycheck and looking after a loved one. My Administration is committed to easing that squeeze on working families and getting caregivers the resources and respect they deserve. The Department of Health and Human Services’ National Strategy to Support Family Caregivers outlines nearly 350 actions the Federal Government can take to support family caregivers’ health, well-being, and financial security. Our American Rescue Plan provided $145 million to help the National Family Caregiver Support Program deliver counseling, training, and short-term relief to family and other informal care providers.”

Researchers have used CRISPR/Cas9 technology to engineer donor T cells to try to treat seriously ill children with resistant leukemia, who had otherwise exhausted all available therapies.

In a mouse study, researchers worked out a neural pathway that could help researchers alleviate nausea symptoms from chemotherapy drugs.

The standard chemotherapy regimen used to treat patients with newly diagnosed Ewing sarcoma in the U.S. was more effective, less toxic, and shorter in duration than the previous standard used in Europe and should be adopted as the international standard of care.

In recognition of his lifetime commitment to advancing research in childhood cancer, Children’s Cancer Cause presented the 2022 Leonard M. Rosen Memorial Research Award to Malcolm Smith, MD, PhD, Associate Branch Chief for Pediatric Oncology at the National Cancer Institute’s Cancer Therapy Evaluation Program (CTEP).

Upcoming Webinars, Online Opportunities, and Meetings:

CAC2 Members Solving Kids’ Cancer and Solving Kids’ Cancer – UK host the third virtual Neuroblastoma Parent Global Symposium this Friday November 11th (9:00-3:00 ET).  Registration Link

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) will host a virtual workshop on November 18, 10:00-3:30 ET.  The topic is Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults.   Details and Registration Link

Y-mABs presents DANYELZA Caregiver Connection: Navigating the Start of the Treatment Journey on November 8 at 7:00 pm ET.  The search for a treatment is an important time, but it can also feel overwhelming.  At this live virtual event, you will hear from people who understand this journey: a parent and a doctor.  Details and Registration Link

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

NCI will host “Toward equity in cancer pain management for pediatric, adolescent, and young adult populations” on November 17, from 1:00-3:00 pm ET.  Two clinical experts, a research advocate, and a discussant will address challenges in the assessment and management of pain in pediatric, adolescent, and young adult cancer survivors. Speakers will summarize the critical role of patient-parent-clinician collaboration in improving pain outcomes. Speakers will also highlight the importance of strengthening interdisciplinary global capacity to better address pain in pediatric, adolescent, and young adult palliative care settings, and summarize knowledge gaps that should be addressed through additional research.  Details and Registration Link

Recordings of Recent Past Events:

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):

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!  This week please consider contributing to Educational Guidance & Planning category.  The goal is to provide a comprehensive resource that provides meaningful information and resources for survivors and their families, throughout the lifespan. Its time to provide survivors & their families the support they deserve. 💛

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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