CAC2 Childhood Cancer Community News Digest (February 13-19)

Assorted News from the Last Week:

Investigators have found that socioeconomic deprivation, the presence of modifiable chronic health conditions, and frailty may all independently be associated with increased rates of late mortality among pediatric cancer survivors, according to a new study published by Ehrhardt et al in JAMA Network Open. The findings demonstrated that treating chronic health conditions alone may be inadequate to improve survivors’ life spans without policies to improve local environments.

A team of almost 30 experts has compiled the first-ever guidelines on monitoring children for heart damage during cancer treatment.

The National Comprehensive Cancer Network (NCCN) has updated clinical practice guidelines for Adolescent and Young Adults (AYA) Oncology to include sodium thiosulfate injection (Pedmark) to aid in mitigating the risk of cisplatin-associated ototoxicity in pediatric patients with localized, non-metastatic solid malignancies.

Two leukemia studies linking to mother pregnancy:

By studying rare cases of identical twins with leukaemia, scientists have shed new light on the origins of the most common type of childhood cancer – confirming it originates in the womb but that events after birth determine whether or not clinical leukaemia develops.

Maternal genitourinary tract infections during pregnancy were linked to the development of leukemia in offspring, a Danish nationwide study found.

A Tennessee high school student’s engineering class built him a prosthetic hand. . . Wait!?!? High school students can now create prosthetics?

Five key questions to ask yourself in the days following a child’s diagnosis

Penn State THON announced that it raised an all-time annual high of $15,006,132.46 for childhood cancer following the organization’s annual 46-hour no sleeping or sitting dance marathon.

Upcoming Webinars, Online Opportunities, and Meetings:

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.

Buddy’s Place offers an 8-week support group each spring and fall. While children and teens engage in goal-oriented activities that are age-appropriate, parents and caregivers participate in a group focused on understanding children’s grief and how to better help the children work through it. The Spring 2023 Session will begin on March 21, 2023 and the Fall 2023 Session will begin on September 11, 2023.  Click here for more information.

On Friday, March 24, 2023 from  9:00 a.m. – 5:00 p.m. ET NCI is gathering experts from around the country virtually and at the National Institutes of Health campus for the 2023 Childhood Cancer Data Initiative (CCDI) Annual Symposium. The hybrid event will bring together presenters and panelists to discuss CCDI’s progress and opportunities for the future.  Click here for more information and to register.

SAVE THE DATE!  The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023.

Gabriella Miller Kids First Data Resource Center (Kids First DRC). Once again, the Kids First DRC is planning a virtual Community Open House on Wednesday, March 1 from 3:00– 4:00pm/ET.

Recordings of Recent Past Events:

February CAC2 All-Member webinar:  Pediatric Cancer Advocacy In Your Own Backyard

Dr. Kimberly Stegmaier of Dana-Farber Cancer Institute describes the progress her research team has made in Ewing sarcoma. Her team’s work targeting the EWS-FLI fusion, one of the fusion oncoproteins that drives childhood cancers, addresses one of the Cancer Moonshot recommendations set forth by the Blue Ribbon Panel.

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 Conquer Cancer Patient Advocate Scholarship Program provides an opportunity for patient advocates to attend the ASCO Annual Meeting in person and then return to their organizations and communities to share what they have learned.  Applications will be accepted online only, from Wednesday, March 8 at 12:00 PM Eastern Time until 12:00 PM Eastern Time on Friday, March 17. Once the application period opens, a link to the fillable online application will be posted on the Patient Advocate Programs at the ASCO Annual Meeting and Conquer Cancer Patient Advocate Scholarship Program pages of Cancer.Net, ASCO’s patient information website.

The ASCO-Sponsored Patient Advocacy Booth at the 2023 ASCO Annual Meeting will provide 40 complimentary exhibits to patient advocacy organizations.  The 2023 ASCO Annual Meeting will be held at McCormick Place in Chicago, from June 2 –6. Applications for FREE booth space will be accepted between Wednesday, February 1 at 10:00 AM (ET) and Friday, February 10 at 5:00 PM (ET).  Click for more information.

Survey Respondents Needed (click): Understanding emotional distress in childhood survivors of cancer – posted by an NHS psychologist conducting this research with the University of Liverpool and Alder Hey Children’s Hospital. Participants: 12 – 18 yrs & parents

Caretaker Study Participants Needed (click): Michigan State University researchers need your help to understand how to improve food safety recommendations for cancer patients! We are recruiting caretakers of cancer patients ages 18 and younger who are currently in treatment or have been in the past two years. We are looking for participants to complete a 10-minute online survey and optional 30-minute online interview. Participants will be compensated $10 for completing the survey and $25 for completing the interview, in gift cards of their choice. You may contact Carly Gomez () with any study questions.

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 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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