CAC2 Childhood Cancer Community News Digest (April 25-May 1)

Assorted News from Last Week:

The Coalition Against Childhood Cancer is pleased to announce the 2022 Annual Summit hosted by Children’s Hospital of Philadelphia and presented by Day One Biopharmaceuticals.  This annual event reflects the CAC2 values and mission by providing top-notch educational programming, designing multiple opportunities for members to connect and engage, and showcasing the ongoing work of our members who are working for a future without childhood cancers.

The Alliance for Childhood Cancer sends its thanks for a fantastic Action Day on April 28!  Nearly 300 advocates from 39 states and Washington, DC participated and attended almost 200 meetings sharing their stories and asking for congressional support for important legislation and funding for childhood cancer.

During last week’s Childhood Cancer Action Day, legislation to reauthorize the Childhood Cancer STAR Act was introduced in both chambers of Congress!

Pediatric and young adult survivors of acute leukemia who underwent allogeneic hematopoietic stem cell transplantation appeared to be at increased risk for late mortality.

In studies using mice grafted with human Ewing sarcoma tissue, researchers have identified a biological pathway that is activated when tissue is starved of oxygen due to rapid growth of a tumor, thereby allowing cancer cells to make genetic changes so they can metastasize to the bone and thrive even when exposed to chemotherapy.

Upcoming Webinars, Online Opportunities, and Meetings:

On May 11 at 2:00-4:00 ET, join the NIH Common Fund for another public webinar.  Register to hear updates from the Gabriella Miller Kids First Pediatric Research Program (Kids First), as well as latest research findings from Kids First investigators. The Kids First Data Resource Center (Kids First DRC) will also be on hand to present updates on the latest analysis tools and resources in development within the Data Resource.

On Thursday, May 19 at 1:00 ET, CAC2 Member PREP4Gold will present a prevention webinar on the topic of  Childhood Cancer Prevention: The Ultimate Form of Cure. Don’t miss this opportunity to gain a better understanding of prevention of childhood cancer, and how you can get involved in this important advocacy. Register link.

Virtual Triage Cancer Conference on Saturday, May 21, 2022  7am-3:30pm PT | 9am-5:30pm CT | 10am-6:30pm ET include sessions on:

Being an Empowered Patient and Advocate
Health Insurance: Understanding Your Options & Using Your Coverage
Practical Tools for Managing Medical Bills, Your Financial Health, & Estate Document
Employment Issues: Working Through Treatment and Taking Time Off
Disability Insurance: Options, Applications, & Appeals

The U.S. Food and Drug Administration and the Duke-Margolis Center for Health Policy will convene a virtual public workshop on May 24 and 25, 2022, to present best practices and use cases for successfully bringing forward evidence generated through translational science for regulatory submissions.

The 20^th International Symposium on Pediatric Neuro-Oncology, ISPNO 2022 from 12 – 15 June 2022, and the Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) in Hamburg, Germany, from 11 – 12 June 2022.  Registration link.

Recordings of Recent Past Events:

Danielle Riberio from Great.com interviewed Coalition Against Childhood Cancer as part of their ‘Great.com Talks With…’ podcast.

Take Action:

The following Action Opportunities are sponsored by Childhood Cancer International (CCI) to aid children with cancer and their families in the Ukraine.  CAC2 is a member of CCI.

The campaign to support Ukrainian families is called the Ukrainian Childhood Cancer Emergency Fund.  All funds will be centralised on CCI Europe’s bank account and spent following a strict and transparent workframe including regular reports.

Childhood Cancer International has a call for real life stories to focus attention on the childhood cancer community. “We will be using actual stories from real people worldwide, including: patients and their families, survivors, bereaved parents and health providers. For this, we need your help. We want to highlight what CCImembers organizations are doing in each region and the impact they are having. Our goal is to portray testimonials from all around the globe, so your inputs are crucial.”  This is an open invitation.  We want to expand your voice and to give visibility to everyone.  Submit stories here.