CAC2 Childhood Cancer Community News Digest (August 29-September 11)

Assorted News from the Last Two Weeks:

National Cancer Institute’s CCDI Molecular Characterization Initiative adds rare tumors.

Study provides first in-depth look at major mix-ups in the genomic terrain of pediatric high-grade gliomas.

LLS is working to change the pediatric clinical trial model.

The aftermath of childhood cancer:  2000 days without Ana

Biden appoints former government scientist as first leader of ARPA-H.

The use of tisagenlecleucel (Kymriah) in children younger than 3 years of age with relapsed or refractory B-cell acute lymphoblastic leukemia (ALL) was as effective, and safe, in a retrospective cohort study as it was previously seen to be for older children in the ELIANA trial.

In a clinical trial of nearly 1,200 children with high-risk neuroblastoma, researchers have confirmed that the immunotherapy drug dinutuximab (Unituxin) can help children live longer.

Scientists have created a roadmap of the genetic mutations present in the most common childhood cancer, acute lymphoblastic leukemia (ALL). The study supplies a comprehensive view of the genomics of all subtypes of ALL.

Upcoming Webinars, Online Opportunities, and Meetings:

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.

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).

The co-chairs of the Congressional Childhood Cancer Caucus would like to invite you to the 13th Annual Childhood Cancer Summit to take place on September 22, 2022 in Washington, D.C. All RSVP’s should be directed to Ellie Gable at .

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.

Take Action:

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

Building on the #CancelChildhoodCancer campaign from 2021, CAC2 will be sharing childhood cancer facts and information on our social media channels using facts from the Childhood Cancer Fact Library.  You can access graphics here. The bottom left corner of each image has been left open for you to add your organization’s logo. Be sure to use #GoldStrong and #CancelChildhoodCancer when sharing these posts to amplify the messaging.

The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.

PBTF’s Survivorship Resource Guidebook has more information and tools to help your family navigate life after treatment ends. Download or request a copy today: http://www.curethekids.org/survivorship-guidebook

Treat House is partnering with B+ for Childhood Cancer Awareness Month! This month only, $5 from all ‘Kids Packs’ purchased will be donated to B+ to fight childhood cancer!  Shop today at TreatHouse.com/BePositive

Kendra Scott, the popular boutique jewelry and accessories brand, will host a shopping event to support TRF Saturday, Sept. 17 from 1 to 3 p.m. at Kendra Scott Summerlin in Las Vegas, located at 1980 Festival Plaza Dr.  Shop online Saturday, Sept. 17 and Sunday, Sept. 18 using the code “GIVEBACK-CNJJQ” at checkout.

Mystic Force Foundation is giving you the best reason to indulge in a dozen (or two) Krispy Kreme doughnuts. September is National Childhood Cancer Awareness Month, and we have teamed up with Krispy Kreme!  40% of your order will be donated back to Mystic Force Foundation when you purchase via our fundraising sales page during the entire month of September!!

Register to play cards and/or shop at our Annual Boutique and help raise funds towards our mission to eradicate pediatric cancer. https://secure.qgiv.com/for/cardsandboutique/event/854151/