CAC2 Childhood Cancer Community News Digest (November 18-25)

Join in this December 5th for the first-ever International Neuroblastoma Awareness Day! Together, we’ll shine a global spotlight on this rare and aggressive childhood cancer, uniting researchers, advocates, and families from around the world. Click here for more information.

LLS is hosting a virtual education program that will explore coping strategies that caregivers can use to navigate the difficult emotions that come with a blood cancer diagnosis, “Could Humor Help Your Family Cope With a Blood Cancer Diagnosis?” on December 5 at 1:00 pm ET.  For more information and to register.

In honor of National Grief Awareness Week during the first week of December, SAMHSA is hosting two informational webinars with experts in the field of bereavement: the second one is “What to do with the Wounds that Time Does Not Heal?” on December 6 at 1:00 pm ET.  For more information and to register.

Join Dr. Jack Shern, head of the Tumor Evolution and Genomics Section in the Pediatric Oncology Branch at NCI, for a webinar exploring the Molecular Characterization Initiative’s (MCI’s) impact on people with pediatric soft tissue sarcoma on December 10 at 1:00 pm ET. Click here to register (required).

Take Action:

The Grayson Foundation and The American Childhood Cancer Organization are partnering to bring a Childhood Cancer Awareness specialty license plate to Tennessee residents.  While Tennessee has several children’s hospital license plates, it does not have a general childhood cancer awareness license plate with a gold ribbon.  This is a simple way to honor all the young warriors across the state who are in treatment, in remission, or in Heaven.  The state requires 1,000 preorders before they will begin to produce and issue the new tag.  Will you please help us by sharing this information with your contacts in Tennessee?  If we do not reach 1,000 preorders by 6/30/25, the tag won’t happen.  The link to preorder a license tag is: https://s.acco.org/Reserve-TN-Plate

If you or someone you know resides in Kentucky, please contact Senator Rand Paul’s office to support H.R. 3391/S. 1624 – The Gabriella Miller Kids First Research Act 2.0 a crucial program that supports research into childhood cancer and structural birth defects. Watch the two minute tutorial video to see how easy it is to do. Then click on the bottom link to complete the letter. The goal is to have 500 emails sent to each of these senators offices between now and Thanksgiving.  After watching the video, click this link below to send the email: https://rebrand.ly/jnpp25v.

CAC2 Innovation Council Recommendation: Research Opportunity for Caregivers of Children or AYA Patients with Cancer Diagnoses 

Overview of the Opportunity:  This is a request from the NIH Intramural Research Program for us to share information about and invite participation in a study that seeks to identify caregiver-reported and AYA-reported barriers to and facilitators of clinical trial/research study enrollment and participation.

Supporting Documentation: Studies show that child and adolescent participation in clinical trials is associated with improved cancer survival outcomes. However, there are significant racial, ethnic, and socioeconomic disparities in pediatric clinical trial enrollment. Additionally, adolescents are the least likely age group to enroll in clinical trials.

The research team hopes that by better understanding the experiences of caregivers and AYAs specifically around decision-making in regard to clinical trial participation, they can identify facilitators and modifiable barriers and implement initiatives to reduce those barriers and make clinical trials and lifesaving care more accessible to all youth with cancer.

Participation in this study involves responding to a composite survey online that takes 20 minutes to complete. The composite survey is anonymous, does not collect any personal identifiable information, and is available in English and Spanish. All participants are provided with Findhelp and Crisis Text Line as resources to help address any identified unmet needs; participants are also encouraged to communicate with their medical team about any unmet needs. This study has been approved by the NIH IRB as IRB exempt given it is an anonymous, low-risk survey that is not collecting protected health information or sensitive personally identifiable information).

The direct link to the survey is included here (https://www.surveymonkey.com/r/RKB953R).