CAC2 Childhood Cancer Community News Digest (May 26-June 1)

June 2, 2025 Community News, News Digest

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:

Two Survivorship articles:

Sperm donor’s genetic mutation linked to cancer in 10 conceived children.

Kazakhstan and Uzbekistan to establish pediatric cancer center and Ghana makes plans for a children’s cancer center.

Independent research from Johns Hopkins validates Lantern’s data used to secure the FDA Rare Pediatric Disease Designation for LP-184 in ATRT and supports planned pediatric clinical trial

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/nci/ods-data-jamboree) will be held on September 2025, 09/29 – 09/30. Interested individuals are highly encouraged to join this event, register and submit a project abstract summary concurrently. Before submitting a project abstract, interested folks are encouraged to identify potential datasets to be accessed and used, and tools if applicable (see Resources) to solve a specific question. The project abstracts will be reviewed and selected by a committee after the due date ofJune 23. Even if they are just looking to join a team without proposing project ideas, they can submit an abstract indicating their areas of interest. Travel sponsorship will be considered once the project is selected and their attendance confirmed.

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.

 

SUBSCRIBE

Sign up to receive a copy of CAC2's free childhood cancer news digest in your inbox each week.

Name(Required)
Email(Required)
This field is for validation purposes and should be left unchanged.

Archives

Enquire now

Give us a call or fill in the form below and we will contact you. We endeavor to answer all inquiries within 24 hours on business days.