Assorted News from the Last Week:
Children and young people are waiting longer than necessary for cancer diagnosis, according to new research. Disruptions to school, work and personal milestones are only some of the disruptions that adolescent and young adult (AYA) patients with lymphoma uniquely face following their diagnosis, creating a need for individualized care which would take emotional and psychosocial needs into consideration. Pediatric cancer patients and their caregivers largely prefer to access test results immediately through the patient portal rather than wait to hear about results from oncologists. Two Wilms tumor articles:- It remains unclear why some paediatric tumours appear to have such a low mutation burden. To understand this better, researchers analyzed Wilms tumors using high resolution and high depth sequencing approaches and found that due to an unusual clonal architecture, standard methods significantly underestimate the mutation burden at the cellular level.
- Using samples from the Wilms tumor biobank, a research team was able to systematically decipher the hereditary predisposition for Wilms tumors in a large cohort.
- Scientists from St. Jude have found that genetics and type of cancer treatment contribute most to a survivor’s risk of a second cancer.
- Mapping lifelong chronic health risks for childhood cancer survivors.
Upcoming Webinars, Online Opportunities, and Meetings:
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
MIB Agents FACTOR Osteosarcoma Conference brings together the leading osteosarcoma researchers, clinicians, patient families, osteosarcoma survivors, patients, and bereaved parents to Make it Better (MIB) for those battling this disease. The conference is is Salt Lake City, UT on June 26 – 28 2025. Click here for more information and to register.
Past Recordings:
Webinar in honor of Hepatoblastoma Awareness Day, Julie Chessell, nurse and mother, shares her son’s life-saving transplant journey — blending medical insight with personal experience and Dr. Nicole Nunez from Eureka Therapeutics discusses cutting-edge T-cell therapy and the ARYA-2 clinical trial for pediatric liver cancers. The National Coalition for Cancer Survivorship (NCCS) presented “Understanding Medicaid: What Advocates Need to Know.” Designed for cancer survivors, caregivers, and health care professionals, this session sheds light on Medicaid’s critical role in providing health coverage to 74 million Americans, including cancer survivors and their families.Take Action:
The Childhood Cancer Data Jamboree (https://events.cancer.gov/
At CAC2 we are focused on children with cancer, but the issues impacting them are wide ranging and often far bigger than what the childhood cancer community can accomplish on their own. We align with others— sometimes leading the charge, sometimes following and supporting their efforts. The following post is a Call to Action from the Haystack Project: The Voices of Rare and Ultra Rare (https://haystackproject.org) concerning possible Medicaid cuts: https://www.cac2.org/guest-blog-save-medicaid-materials-to-share-with-your-communities/. We discussed this issue previously. The Bill recently passed the House and has moved from the House to the Senate.
The International Neuroblastoma Risk Group (INRG) Executive Committee are looking for patient advocates to be active members of the committee. Expression of Interest document.