CAC2 Childhood Cancer Community News Digest (June 26-July 2)

July 3, 2023 Community News, News Digest

Assorted News from the Last Week:

Yoram Unguru (past CAC2 Summit speaker, bioethicist, and uncle of a pediatric cancer survivor) on the cancer drug shortage. (gated, but excellent)

Children, adolescents, and young adults with cancer (CAYAs) remained at increased risk for mental health disorders after the remission of their cancer.

Summary of the ACCELERATE Paediatric Strategy Forum on PI3K, mTOR, AKT and GSK3β Inhibitors in children and adolescents

The Comprehensive Cancer Survivorship Act (CCSA) was introduced in both the U.S. House and Senate.  This is a critical piece of comprehensive legislation that will address gaps in survivorship care and develop desperately needed standards to improve the overall patient-centered quality of care and navigation needs of cancer survivors and their families.

“Readers respond to Kate Pickert’s essay about the recent revolution in tackling cancer” includes a letter fromCAC2 Member Gavin Lindberg criticizing the lack of attention to pediatric drug development. (third letter down, possibly gated)

Upcoming Webinars, Online Opportunities, and Meetings:

Rocky Mountain Vintage Racing is pleased to announce a 2-year festival series culminating in 2023 with the FV 60th anniversary on July 28-30. RMVR’s Race Against Kids’ Cancer (RAKC), will be at High Plains Raceway where these wonderful cars of all years and vintages are invited to gather to celebrate this class. Click for more information about Vintage Car Races for Fundraising.

Triage Cancer Webinar:  Engaging in Self-Advocacy. Learn practical tips for collecting medical records, talking with health care teams, navigating work and cancer, applying for benefits, filing appeals, identifying inaccurate online information, and more. July 26 1:00 ET.  Learn more and register.

Registration for CureFest 2023 is now open! Register today at:  www.curefestusa.org
Join top scientific experts, clinicians, researchers, NCI, childhood cancer foundations and advocates, agency officials, and many more for the Inaugural Childhood Cancer Prevention Symposium.  This ground breaking meeting will take place at Children’s National Research & Innovation Campus in Washington, DC on October 25-26th, 2023.  (Registration and meeting details forthcoming shortly).

Recordings of Recent Past Events:

CCDI be demonstrated how to use the CCDI Hub and CCDI Childhood Cancer Data Catalog.  View the slides from the presentation. 

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):

  • Robin French (The Morgan Adams Foundation and CAC2 Board Member)

Sibling Bereavement Video Series

Childhood Cancer International hosted a pair of webinars to celebrate Survivors’ Month.  Survivors around the world share the label but not necessarily the experience:

Take Action:

Pediatric Cancer legislation needs your support.  Learn more about how to support the Gabriella Miller Kids First Research Act 2.0, the Sawyer Finn ACT, Comprehensive Cancer Survivor Act, Accelerating Kids’ Access to Care Act,and the Give Kids a Chance Act.

Fennec Pharmaceuticals announced its HELPS™Advocacy Grant Program, available to nonprofits with a focus on childhood cancer and the lifelong impact of treatment. The Fennec HELPS grant supports 501(c)3s who educate about childhood cancer. Awards will range from $1,000 to $100. For information on the FENNEC HELPS™ Advocacy Program – and to apply – visit: https://form.jotform.com/231426741678058.  The application deadline is July 31st. Funds must be used by Dec 31st, 2023.

 

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