CAC2 Childhood Cancer Community News Digest (September 12-18)

Assorted News from the Last Week:

Supporting Children and Families Through a Cancer Diagnosis by Child Life Specialist Nicolle Bengtson.

Nearly 20 years since her initial diagnosis, CAC2 Member Juanita Prada now works with children who are fighting cancer just like she did.

Day One Biopharmaceuticals emerged in May to develop new drugs specifically for children with cancer. Now, as it ramps up its work, the company is making a flurry of new hires and new board appointments, including a new CEO: Jeremy Bender, Ph.D., who previously led corporate development at Gilead Sciences.

Challenges burden pediatric oncologists following the peak of COVID-19

About 40, 000 Nigerian children are diagnosed of different types of childhood cancers every year, out of which 80 per cent die due to poor detection and clinical treatment.

NCI released the NCI Annual Plan and Budget Proposal for Fiscal Year 2024.  The plan sets forth NCI’s vision for advancing cancer research and the resources needed to make progress.

U.S. Food and Drug Administration and the United States Pharmacopeia (USP) released an educational resource to help healthcare practitioners explain to patients how biosimilar biological products are high quality products and safe and effective treatment options.

Upcoming Webinars, Online Opportunities, and Meetings:

The White House Office of Science and Technology Policy (OSTP) will host a forum in recognition of National Childhood Cancer Awareness Month on Friday, September 23rd from 3:00 pm – 5:00 pm.  This convening will bring together patients, caretakers, oncologists, and administration officials, who will provide updates on progress of several key initiatives and serve as an important opportunity for the community to make their voices heard.  Details.  Live Stream Link: wh.gov/live

 

Mental Health and the Childhood Cancer Journey—A Panel Discussion”. This panel shares insights into the lives of those who have been touched by childhood cancer, whether they be a parent, survivor, or clinician. They discuss dealing with emotions, learning to be vulnerable, finding the strength to fight, figuring out how to cope together, and much more.  September 26.

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.

Children’s Cancer Cause hosted a virtual externally-led Patient-Focused Drug Development (PFDD) meeting on Reducing Cardiac Late Effects in Pediatric Cancer Survivors, on September 15, 2022.  Watch the recording.

Dr. John ‘Jay’ Schneekloth Jr. from NCI delivered the September 9th NCI sponsored webinar, entitled ‘Tools and Tactics for Targeting RNA with Small Molecules.’   The recording of this webinar is now available and can be accessed by the following link: Novel Chemical Approaches for Targeting Fusion Oncoproteins 9/9/2022-Edited (vbrick.com).

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 .

 

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.

From our friends in the DIPG community:  Please help us make history for children with cancer and push H. Res. 404 over the finish line.  https://dipgadvocacy.org/…/2022/09/0-Sept15_22Congress.pdf

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

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/

The FDA announced the call for applications for new members of the Patient Engagement Collaborative (PEC). The PEC is a group of patient organizations and individual representatives who discuss ways to enhance patient engagement.  The first 75 applications will be considered and up to eight members will be selected. Applications can be submitted starting at 11:59 p.m. eastern time on September 19, 2022. https://duke.qualtrics.com/jfe/form/SV_8GLMiCsqKn5iMJw