CAC2 Childhood Cancer Community News Digest (September 18-24)

Assorted News from the Last Week:

U.S. Congressman Michael McCaul (R-Texas) and Childhood Cancer Caucus Co-Chairs Ami Bera (D-Calif.) and Mike Kelly (R-Pa.) introduced the Childhood Cancer Clinical Trials Act, legislation to ensure pediatric cancer patients can access and afford clinical trials offering cutting-edge treatment.

Among pediatric patients with low-grade glioma with BRAF V600 mutations, dabrafenib plus trametinib resulted in significantly more responses, longer progression-free survival, and a better safety profile than standard chemotherapy as first-line therapy.

Acute and long-term psychosocial consequences in grandparents when a grandchild is diagnosed with cancer – the GROKids Project.

NCI released its Fiscal Year 2025 (FY25) Professional Judgment Budget Proposal: Leading Progress against Cancer and the National Cancer Plan this week.

The Children’s Oncology Group (COG) announced the opening of two new clinical trials for pediatric and AYA CNS patients during their September meeting earlier this month.

CAC2 Member Juanita Prada interviewed for KBDJ7 in Roanoke.

How Amazon is showing support for kids with cancer.

CAC2 Supporting Organization Jazz Pharmaceuticals has been granted marketing authorization by the European Commission (EC) for Enrylaze® for use as a component of a multi-agent chemotherapeutic regimen for the treatment of acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL) in adult and pediatric patients.

To close out Childhood Cancer Awareness Month, visit the CCDI Community page and read stories about our children and the professionals who care for them.

Upcoming Webinars, Online Opportunities, and Meetings:

Oncoheroes has built a multi-asset portfolio of three drugs that can potentially treat up to 8 types of pediatric cancer.  They will offer a webinar at noon ET on September 28 to delve into Oncoheroes’ recent accomplishments and gain an exclusive preview of our forthcoming plans to invite everyone to become part of Oncoheroes.  Learn more and register.

MyPART will partner with the Life Raft Group to hold the NIH Pediatric and Wild-Type GIST Clinic at the NIH Clinical Center in Bethesda, MD. The clinic brings patients and families together with expert clinicians and researchers. To learn more about the upcoming clinic, please email BJ Thomas, RN at .

On September 30, 2023 a team of experts will return to Milwaukee to conduct a rappelling event down the 10-story, 147-ft tall Wintrust Commercial Bank Building to celebrate Childhood Cancer and Sickle Cell Awareness Month.  Learn more and register.

The Austin Hatcher Foundation’s Celebration of Life and Hope is an annual event hosted on September 30 this year and is a celebration of the lives served by the foundation and shares the hope for a brighter future for families faced with childhood cancer. Learn more and register.

Attend the Gabriella Miller Kids First Pediatric Research program (Kids First) public webinar featuring a Kids First Data Resource Center portal update on October 2nd 1-3 p.m. ET.  Learn more and register.

Eluna’s Camp Erin® Online is hosting a free event for teens and young adults on Saturday, October 7th called Just BE: Mindfulness & Movement.  Learn more and register.

Register for the 55th SIOP in Ottawa, Canada on October 11-14. Experience 4 outstanding days of cutting-edge science, engaging debates, and networking with world-renowned experts.  Learn more and register.

Free educational conferences offered by Triage Cancer on cancer-related topics including navigating finances, health and disability insurance, employment rights, advocacy, and more. Next one on October 14 from 10:00-6:30 CT.  Learn more and register.

Join leaders and advocates across pediatric cancer as we come together on October 18-19 for CureSearch’s virtual 2023 Pediatric Early Development Symposium.  Learn more and register.

On October 24 at 2:00 ET, Dr. Angela Mariotto, chief of the Data Analytics Branch in NCI’s Division of Cancer Control and Population Sciences, will showcase the combined potential of NCCR*Explorer and SEER*Stat, two tools available through the CCDI National Childhood Cancer Registry (NCCR). Through a live demonstration and real-world examples, attendees will learn how to harness these resources for cancer research and surveillance. Attendees will also have the chance to ask questions during the session’s Q&A. Register.

Join top scientific experts, clinicians, researchers, NCI, childhood cancer foundations and advocates, agency officials, and many more for the Inaugural Childhood Cancer Prevention Symposium.  This ground breaking meeting will take place at Children’s National Research & Innovation Campus in Washington, DC on October 25-26th, 2023.  (Registration and meeting details forthcoming shortly).

Recent Recordings:

Building on last year’s White House Childhood Cancer Forum, this year’s event convened key advocates, patients, caregivers, oncologists, researchers, and administration officials to share updates on key policy, public and private sector initiatives, and generate solutions to advance progress that will deliver better outcomes for all patients and families.  Click to watch the Forum.

This Childhood Cancer Awareness Month, National Cancer Institute leaders Dr. Nirali Shah and Dr. Christine Heske from the Center for Cancer Research break down some of the novel new therapy developments targeting b-cell acute lymphoblastic leukemia and other rare cancers that affect children.

Take Action:

Pediatric Cancer legislation needs your support.  Learn more about how to support the Gabriella Miller Kids First Research Act 2.0, the Sawyer Finn ACT, Comprehensive Cancer Survivor Act, Accelerating Kids’ Access to Care Act, and the Give Kids a Chance Act.

Phase 1/2 trial which aims to determine the safety and feasibility of anti-CD33 chimeric antigen receptor (CAR) expressing T cells (CD33CART) in children and adolescents/young adults (AYAs) with relapsed/refractory acute myeloid leukemia (AML). The trial will be done in two phases: Phase 1 will determine the maximum tolerated dose of CD33CART cells using a 3+3 trial design. Phase 2 is an expansion phase designed to evaluate the rate of response to CD33CART.

International Children’s Palliative Care Network (ICPCN) are excited to announce that the 2023 Digital Toolkit has been officially launched and is now available to download on the ICPCN #HatsOn4CPC website page. The #HatsOn4CPC annual campaign will be held on Friday 13th October 2023.

To help spread the word about the Childhood Cancer Data Initiative (CCDI), the National Cancer Institute has created a communications toolkit with a CCDI overview flyer, a one-pager with frequently asked questions about the CCDI Data Ecosystem, and sample social media posts and graphics.  Access the toolkit, and feel free to reference, copy, and use its content for inspiration.


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