CAC2 Childhood Cancer Community News Digest (July 31-August 6)

Assorted News from the Last Week:

Tribute to CAC2 Member Donna “Nana” Marie Carmical’s (Journey4ACure) life was a testament to the power of love, determination, and selflessness. Her journey from a grieving grandmother to a fierce advocate for childhood cancer showcased her unyielding commitment to making the world a better place for young patients.

Epigenetically guided cancer therapy: Targeting H3K27me3 loss in pediatric brain tumors

The addition of blinatumomab (Blincyto) to chemotherapy did not improve overall survival (OS) and disease-free survival (DFS) over chemotherapy alone among patients younger than 30 years old with low-risk, B-cell acute lymphoblastic leukemia (ALL) in first relapse; however, the regimen did confer benefit in patients with bone marrow and/or extramedullary relapse.

The use of targeted therapies focusing on protein pathways in patients with pediatric low-grade gliomas (pLGG) has resulted in several impactful treatments and ongoing trials that have shown effectiveness and tolerability in a real-world setting.

The treatment of pediatric patients with T-cell acute lymphoblastic leukemia (T-ALL) has benefited from numerous advancements in survival outcomes, but there are pressing needs for better risk assessment and the use of targeted therapies in the frontline setting.


Upcoming Webinars, Online Opportunities, and Meetings:

On August 11, 2023, 11:00 am – 12:00 pm ET, NCI will host a pre-application webinar for RFA-CA-23-036 Mechanisms of Fusion-Driven Oncogenesis in Childhood Cancers (U01) and RFA-CA-23-037, Next Generation Chemistry Centers for Fusion Oncoproteins (UM1). Program directors will provide orientation and programmatic guidance to potential applicants by explaining the goals and objectives of these funding opportunities and answering questions from attendees. Click here to registration.

Triage Cancer will offer a webinar on School & Cancer: Going to College on August 24 at 1:00 ET about navigating college and cancer, including how to get help through accommodations, working with professors, and tips for a smooth transition from high school to college.  Learn more and register.

Zoefia Alexandria Green Heart Gala, beautiful night of elegance and celebration to raise funds and awareness for Childhood Cancer/ Brain Cancer, September 15 at 7:00 pm ET.  Learn more and register.

Registration for CureFest 2023 is now open! Register today at:

MyPART will partner with the Life Raft Group to hold the NIH Pediatric and Wild-Type GIST Clinicat 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 .

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.

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

CAC2 Member Swifty Foundation has a new video “ A Journey of Hope – Tissue’s Journey to Improve the Lives of Children with Brain Cancer.”  Tissue is vital to fueling research we all need to better understand how these precious gifts impacting research. Video is produced with minimal branding and is open source for anyone who would like to utilize this as a resource or tool.

Take Action:

An invitation from CAC2 Member Mark Levine: “As I continue to try and raise awareness in the battle against Pediatric Cancer I want to once again thank all of you who have joined my HELP AND HOPE HAPPEN HERE Pediatric Cancer Facebook Group. . . . if any of you would like to come on to my show or know of someone who you think might want to share their story then please let me know. . . . you can email me at . I am also on Instagram and my “handle” ( if that is what you call it) is mark.levine.1654

Children’s Cancer Cause invites teen, young adult, and adult survivors of childhood cancers to participate in their 2023 survivor survey.

CIRM (California Institute of Regenerative Medicine) is a California state-funded organization to advance gene and cell therapies in California. The grant application (linked here) is specifically for an organization with a California operating license that provides Patient Support Services and could help patients and families access these trials.  A CAC2 Member would be happy to partner with any organization that may have an interest in this application.

Zach’s Bridge is looking for bereaved parents and caregivers to complete a survey to help families facing advanced pediatric cancer. The survey takes less than 5 minutes and will help improve the services that Zach’s Bridge Peers provide. Please share with your organizations and bereaved families you know. Take the survey

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.

The FDA and CTTI announced the call for applications for new members of the Patient Engagement Collaborative(PEC). The PEC is an ongoing, shared forum in which the patient community (PEC members), FDA, and CTTI discuss a variety of topics such as improving communication, education, and patient engagement related to medical product regulation.  This announcement is open to receive a maximum of 75 applications. Applications will be accepted until 11:59 p.m. Eastern Time on August 14, 2023 or until 75 complete applications are received, whichever happens first.  Interested candidates are encouraged to apply early.



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