CAC2 Childhood Cancer Community News Digest (April 18-24)

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 will hold its 11th Annual Childhood Cancer Action Days on Thursday, April 28. This virtual event brings our community together to advocate for important childhood cancer issues currently before Congress.

In a new study published recently in Pediatric Nephrology, researchers from Nationwide Children’s report the incidence of hypertension and kidney issues in pediatric patients diagnosed with acute lymphoblastic leukemia over a recent nine-year period. The findings suggest that long-term monitoring of blood pressure and kidney function in these patients is advisable.

Physician-scientists from Pitt and UPMC Children’s Hospital of Pittsburgh, writing in Nature Cancer, discovered that DMG tumors are uniquely dependent on methionine — an amino acid that humans must receive from food. Developing drugs that specifically target methionine-processing machinery in cancerous cells in the brain but not in the rest of the body might pave way for new non-invasive treatments.

An overview of some of the FDA’s plans for promoting the availability of pediatric therapies in the coming years (including in oncology).

A study found that nearly half of the participants in a study of caregivers for children with cancer had mild levels of depression, and the four domains of the WHOQOL were significantly affected by several risk factors.

“Even after 5 years, we lose children to late recurrence [of their primary cancer] and progression,” Armstrong said. “We also lose children to external causes such as accidents and injuries, trauma and suicide but, by far, the biggest concern is that of nonrecurrence, nonexternal causes. These are medical causes of death that are usually treatment related.”

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:

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):

• Annie Bartosz (Student Member)
• Susan Giusto (Friends of Cathryn Foundation)

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.

The EVAN Foundation (CAC2 Member) is proud to announce the launch of the Evan Lindberg and Erik Ludwinski College Scholarship Program for Childhood Cancer Survivors. HS seniors can apply for awards of $2,500 a year, renewable annually for 4 years of undergraduate coursework. Applications accepted from March 15th – May 1st. Two scholarships will be awarded in 2022 with winners announced July 1st.  Click for more information and to apply.

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.