CAC2 Childhood Cancer Community News Digest (September 26-October 2)

Assorted News from the Last Week:

Upcoming Webinars, Online Opportunities, and Meetings:

Day One will share findings from their recent research on Pharma Engagement with Pediatric Cancer Non-Profit Organizations on October 4 at noon ET.  Registration Link.

CureSearch Pediatric Early Development Symposium: Leveraging Big Data to Advance Pediatric Clinical Trials, on October 12-14.  Details and Registration Link.

Recordings of Recent Past Events:

The White House Office of Science and Technology Policy (OSTP) hosts a forum in recognition of National Childhood Cancer Awareness Month on Friday, September 23rd.  This convening brought together patients, caretakers, oncologists, and administration officials, who provides updates on progress of several key initiatives and served as an important opportunity for the community to make their voices heard.  Watch the recording.

NCI recently hosted a webinar offering a comprehensive update on implementation activities related to the research provisions in the Childhood Cancer STAR Act, which included updates on biospecimen collection and biobanking activities and on survivorship research and reporting activities.  Watch the recording.

Take Action:

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.

If you or any families you know who have been impacted by pediatric brain cancer and affected by Hurricane Ian  and need support, Please message Pediatric Brain Tumor Foundation, email or call 445-895-9078 to speak with our Family Support Manager Jenn Kelley.

Children’s Cancer Cause Advocacy updated and revised its Toolkit earlier this month and it’s now available now for digital download. This guidebook will give you the tools you need to become an informed, effective advocate for kids with cancer and childhood cancer survivors.