CAC2 Childhood Cancer Community News Digest (July 25- August 7)

Assorted News from the Last Two Weeks:

The CCDI Molecular Targets Platform is the National Cancer Institute’s instance of the Open Targets Platform, specific to childhood cancers which will allow researchers to find data from multiple sources on molecular targets—molecules involved in the growth and spread of cancer cells. Identifying these targets, how they affect cancers, and how they interact with drugs can help improve how childhood cancers are treated. To explore the Molecular Targets Platform, visit:

From the Washington Post:  Pushed by parent activists and buoyed by new funding, scientists explore novel strategies to treat deadly pediatric cancers.

From Forbes:  Incentivize the fight against cancer that affects kids:  Cancer Moonshot pathways

Back to School Resources: School Re-entry with a Chronic Illness, a curated resources authored by Elizabeth Anderson, CCLS.

Scientists have found a unique vulnerability in some rhabdomyosarcoma tumors that could potentially be targeted with an experimental drug.

Economic burden of rare diseases 1s 10 times higher than mass market diseases.

A gene that researchers discovered is responsible for the deadliest type of brain tumor is also responsible for two forms of childhood cancer, the scientists have found. The discovery may open the door to the first targeted treatments for two types of rhabdomyosarcoma, a cancer of the soft tissue that primarily strikes young children.

New research has demonstrated that a novel targeted therapy could be an effective treatment option for the deadly pediatric cancer, neuroblastoma.

The Senate Appropriations Committee included language to fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative fully again this year in its Fiscal Year 2023 Labor-HHS Appropriations bill.  In addition, the FY23 Defense Appropriations bill included many topics related to childhood and AYA cancer research and maintained level funding at $130 million for the Peer Reviewed Cancer Research Program.

Upcoming Webinars, Online Opportunities, and Meetings:

Do you know how to advocate for yourself or a loved one during a nuclear medicine (e.g. PET/SPECT/MRI) scan?  Join us on Wednesday, August 17 at 10:30 am ET for a Patients for Safer Nuclear Medicine Coalition webinar that will give you the facts about nuclear scans, including a scan error called extravasation. Click to register.
National Cancer Institute presents Novel Chemical Approaches for Targeting Fusion Oncoproteins, a webinar series, Fridays, 12:00-1:00 ET starting August 19 and continuing through October 21.

Join advocates from around the country for the 2022 Rally for Medical Research! The Hill Day will take place on Wednesday, September 14, with advocates meeting their congressional representatives and staff. The evening before, on September 13, there will be a  reception to celebrate medical research with all partners and participants.

Children’s Cancer Cause is hosting a virtual externally-led Patient-Focused Drug Development (PFDD) meeting on Reducing Cardiac Late Effects in Pediatric Cancer Survivors, on September 15, 2022. The conference is an opportunity for survivors and caregivers to educate representatives of the FDA, academic researchers, and pharmaceutical companies about their personal experiences managing the impact of cardiac late effects on daily living and long-term health.  Registration link.

Save the Date:  Key experts from across the pediatric cancer ecosystem will address the promise and challenges of artificial intelligence implementation in drug development, diagnosis and clinical trial design in the CureSearch Summit Prelude: The Challenges and Promise of Artificial Intelligence in Drug Development on September 15, 2022  3:30PM –5PM (EST).

On September 29th from 3:00-5:00 ET, join the NIH Common Fund’s Gabriella Miller Kids First Pediatric Research Program (Kids First) for their fall webinar to hear updates on the program and latest research findings from Kids First investigators.  Registration Link.

Recordings of Recent Past Events:

CAC2 presented a webinar for Members to learn more about the Foundation Match platform which included a moderated discussion exploring some of the different motives and approaches that CAC2 member organizations that co-fund research adopted and also learning from an investigator about how funding collaboration has the potential to improve the research landscape.

CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):

  • Jim Sexton (Neuroblastoma Children’s Cancer Society)

Take Action:

Submit all September Childhood Cancer Awareness Events for inclusion on the CAC2 Event Calendar/Map.

FDA is requesting nominations for voting and/or nonvoting patient representatives to serve on advisory committees and/or panels for which vacancies currently exist or are expected to occur in the near future.  Advisory committee vacancies are listed in this notice.

For the second year, CureFest will feature a powerful memorial on the National Mall to pay tribute to children who have passed away from cancer.

On Sunday, September 25, organizers will display 1,800 pairs of empty shoes at the base of the Washington Monument across from the National Sylvan Theater. This represents the number of children in the US who pass away from cancer each year.  If you are a bereaved parent and would like to ship a pair of shoes to represent your child, please ship the shoes to the following address by September 12:
CureFest Shoe Memorial
c/o Mike Gillette
10311 Beaumont St.
Fairfax, VA 22030

Enquire now

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