CAC2 Childhood Cancer Community News Digest (September 11-17)

Assorted News from the Last Week:

White House announces new Cancer Moonshot Initiatives, including several initiatives involving CAC2 Members:

  • xCures, a health-data technology platform, is launching a study to enhance the collection and organization of comprehensive data for Diffuse Midline Glioma (DMG) and Diffuse Intrinsic Pontine Glioma (DIPG). The study will streamline and standardize data gathering and identify patterns that can predict disease progression and treatment response, leading to more personalized treatment plans and targeted therapies. xCures pledges to maintain the data infrastructure for this study, and to make the data freely available to academic and government researchers. This will improve access and collaboration, with the ultimate goal of bringing innovation to more patients and providing a better understanding of these deadly cancers.
  • The DIPG DMG Research Funding Alliance is launching an online hub to support pediatric brain cancer patients from diagnosis through treatment and grief support. This hub, DIPG OneLink, will provide entry to two complementary data registry studies by the Children Brain Tumor Network and xCures, enrolling 250 DIPG/DMG patients in 2023 and expanding to over 700 patients by the end of 2024. The project will collect, store, and harmonize clinical records, imaging, and multiomics information that will be readily accessible to families and researchers.
  • The Focused Ultrasound Foundation (FUSF) is committing more than $3 million over the next three years for clinical trials exploring focused ultrasound as part of cancer treatment. In partnership with the Cancer Research Institute and the Parker Institute for Cancer Immunotherapy, FUSF has defined a roadmap to move towards clinical adoption of focused ultrasound and cancer immunotherapy combination treatments in glioblastoma, diffuse midline glioma, pancreatic cancer, liver cancer, breast cancer, and pediatric solid tumors. In addition, and in partnership with Arms Wide Open, FUSF will co-fund a preclinical research project exploring focused ultrasound for neuroblastoma.
  • The National Brain Tumor Society (NBTS) is launching a comprehensive effort to advance quality of life (QoL) research for people facing brain tumors. NBTS will create a new QoL Research Agenda, the first of its kind in the brain tumor space. This work will foster strong patient, clinician, researcher, and industry partnerships to support future QoL research, and NBTS will formally launch its QoL research funding agenda in early 2024.

Women who have been treated for cancer as a child with a certain type of chemotherapy have an increased risk of breast cancer, according to a large-scale international study of survivors of childhood cancer led by scientists from the Princess Máxima Center for pediatric oncology.

CAC2 Supporting Member DayOne Biopharmaceuticals submitted a rolling new drug application (NDA) the the FDA seeking the approval of tovorafenib (DAY101) monotherapy for the treatment of patients with relapsed or progressive pediatric low-grade glioma this week.

As part of NCI’s observance of Childhood Cancer Awareness Month, keep up with the latest on the Research on Childhood Cancer page, for stories like

  • Why Research is Critical to Progress against Childhood Cancer
  • Challenges in Childhood Cancer Research
  • Basic Research Drives Progress against Childhood Cancer
  • Promising Areas of Research on Childhood Cancers
  • How NCI Programs Are Making a Difference in Childhood Cancer


Upcoming Webinars, Online Opportunities, and Meetings:

As part of National Childhood Cancer Awareness Month programming, MACC Fund will host Swingin’ in September, at the Par 3 Baths Course which is located within Black Wolf Run at Destination Kohler.  Learn more and register.

The co-chairs of the Congressional Childhood Cancer Caucus will host the 14th Annual Childhood Cancer Summit on Thursday, September 21, 2023 in Washington, D.C.  Everyone is invited.  All RSVPs should be directed to McKayla Montgomery at .

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 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 .

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.

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.

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:

As part of its Speaking Out video series, CURE spoke with Bruce L. Levine of the University of Pennsylvania Perelman School of Medicine about advancements in treatments for pediatric cancer.

As part of its Speaking Out video series, CURE spoke with Tom Whitehead, co-founder and president of the Emily Whitehead Foundation, about the process of seeking treatment and what resources are available for young patients with cancer and their families.

National Brain Tumor Society presents Managing Quality of Life Care in Pediatric Brain Tumors.

Alex’s Lemonade Stand Foundation’s Crazy 8 Initiative funds research into innovative and rigorous approaches that directly address the most intractable issues in pediatric cancer research today. Project teams of cross-disciplinary scientists work collaboratively, accelerating the pace of new cure discovery, and each grant will provide funding for large-scale collaborative projects in the $1-5 million range.

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.

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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