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

April 28, 2025 Community News, Guest Blogs, News Digest

Assorted News from the Last Week:

Parents of kids with cancer fear GOP budget cuts could slash Medicaid

What I wish I had known: A pediatric oncologist’s transition to survivorship care

The Food and Drug Administration (FDA) has granted breakthrough therapy designation to treatment with an investigational B7-H3 targeting autologous CAR-T cell therapy for pediatric patients with diffuse intrinsic pontine glioma.

Researchers trained and validated a deep learning model that can detect subtle changes across post-treatment brain scans and forecast pediatric glioma recurrence with up to 89 percent accuracy.

Living in a persistent-poverty neighborhood was associated with a higher risk of early mortality and a higher risk of overall cancer death for pediatric cancer patients.

Irish project to implement genomic sequencing in pediatric cancer care.

NIH cuts will set back research into the rare disease that has terrorized my family: Work on Li-Fraumeni syndrome could be set back years or even decades.

Childhood exposure to bacterial toxin may be triggering colorectal cancer among the adolescents and young adults.

Study identifies how malaria can lead to childhood cancer.

Chinese study shows suggest that children aged 8 to 18 years with malignant tumors face a higher risk of internet addiction.

Three children who are US citizens were deported to Honduras with their mothers last week, including a 4-year-old receiving treatment for metastatic cancer, according to the families’ attorneys and civil rights and immigration advocacy organizations.

Upcoming Webinars, Online Opportunities, and Meetings:

Senators Susan Collins (R-Maine.) and Patty Murray (D-Wash.), Chair and Vice Chair of the Seante Appropriations Committee, respectively, announced a full committee (and bipartisan) hearing series on Wednesday, April 30 at 10:30 AM ET in 106 Dirksen Senate Office Building titled “Biomedical Research: Keeping America’s Edge in Innovation.” The first hearing in the two-part series will feature researchers and stakeholder groups to discuss the importance of U.S. biomedical research (including at the NIH, DOD, VA, as well as involving the FDA) for the nation’s health and economy.

CAC2 will host a free public “pop-up” webinar on April 30, 2025 featuring Dr. W. Kimryn Rathmell, immediate past Director of the National Cancer Institute speaking on “Patient Advocacy, Non-Profit Foundations, and the Changing Landscape of Pediatric Cancer Funding.” Click here to register.

The Childhood Cancer Data Initiative (CCDI) will host a webinar on the NCI-funded Pediatric Preclinical In Vivo Testing (PIVOT) program, featuring experts Malcolm A. Smith, M.D., Ph.D., and Carol J. Bult, Ph.D. on May 13 at 1:00 ET.  Click here for more information and to register.

10th Annual Mark Hill Memorial Golf Outing on June 6th at White Hawk Country Club benefitting Northwest Indiana Cancer Kids Foundation on June 6 in Crown Point, IN.  Click here for more information and to register.

The Coalition Against Childhood Cancer will hold its 2025 Annual Summit, hosted by Children’s National Hospital in Washington DC and presented by Day One Biopharmaceuticals. This annual event reflects the CAC2 values and mission by providing top-notch educational programming, designing multiple opportunities for members to connect and engage, and showcasing the ongoing efforts of our members who are working for a future without childhood cancers.  June 15-17.  Register here: CAC2 Annual Summit Registration

Cheerful Hearts hosts online game time for children ages 6 through 14 years old every Sunday at 4:00 pm-4:30 EST. Click here for more information and to register.

Past Recordings:

CAC2’s April webinar, “The Role of AI from Diagnosis to Treatment for Childhood Cancer”

Video of highlights from the March 26, 2025 Congressional Forum that Senators Tammy Baldwin (D-Wisconsin) and Peter Welch (D-Vermont) convened to spotlight how ongoing interference at the NIH—from canceled grants and leadership upheaval to massive staffing cuts—is already derailing research and putting patients’ lives at risk.

No Finish Line: Running 140 Miles for Childhood Cancer — a film that captures the absolutely grueling Folsom Lake 140: a 140-mile trail run with 18,900 feet of climbing, nearly 46 hours on foot, and zero sleep… all to honor 106 incredible kids (34 fighters, 29 survivors, and 43 forever).

Take Action:

The following members of the Energy and Commerce Committee have announced town halls during the upcoming recess, which is last week and this week. Please attend a town hall and ask for the Representative’s support for the Give Kids a Chance Act
  • Rep Kathy Castor in St Petersburg and Tampa, FL
  • Rep Debbie Dingell in Ann Arbor, Michigan
  • Rep. Nannette Diaz-Barragan in LA/Compton
  • Rep. Jennifer McClellan in Richmond, VA
  • Rep. Lizzie Fletcher in Houston, TX

The 2025 Evan Lindberg & Erik Ludwinski College Scholarship Program is open to high school seniors who are survivors of a high-risk cancer or in treatment for a high-risk malignancy.  Students must be accepted into a 4-year undergraduate institution and demonstrate a need for financial assistance.  For information and to apply.

CAC2 Innovation Council Recommendation: Social Genomic Mechanisms of Health Disparities among Adolescent and Young Adult (AYA) Survivors of Hodgkin and Non-Hodgkin Lymphoma

 

The Requester: Study team led by Dr. Brad Zebrack, University of Michigan, School of Social Work

Overview of the Opportunity:  The study seeks to understand more about how the world that teen and young adult lymphoma survivors live in affects the outcomes of their cancer treatment.

The Type of Request: Information sharing about an adolescent and young adult survivor study of health disparities.

The Ask:  Inform CAC2 Members about the study called Social Genomic Mechanisms of Health Disparities among Adolescent and Young Adult (AYA) Survivors of Hodgkin and Non-Hodgkin Lymphoma that is currently recruiting 18 – 39 year olds who have completed treatment for Hodgkin or Non-Hodgkin Lymphoma and are within 3 years since the end of treatment. Distribute the informational flyer within members’ networks.

Supporting Documentation:

The study has two primary goals:

  • Help develop approaches that improve the mental and physical quality of life for patients and survivors
  • Help create more effective treatment and better survivorship care for young adult cancer patients

Informational Flyer for distribution: http://www.cac2.org/wp-content/uploads/2025/03/Adolescent_Young_Adult_Survivor_Study.pdf

Website: https://aftercancergenomics.org

3-minute video explaining the study: https://www.youtube.com/watch?app=desktop&v=xDlnWKvtkuU&feature=youtu.be

 

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