CC Community News Digest (March 22-28)

Assorted news from the last week:

CNN reporter and recently bereaved dad writes:  the Gabriella Miller Kids First Research Act 2.0 would take money from pharmaceutical companies that behave badly and use it to pay for desperately needed pediatric disease research.

The U.S Food and Drug Administration (FDA) has granted Orphan Drug and Rare Pediatric Disease (RPD) Designations for a radiopharmaceutical for Positron Emission Tomography (PET) imaging, the clinical management of pediatric patients with Diffuse Intrinsic Pontine Glioma (DIPG).

End-of-Life Care:  A Conversation

Recent research tested the efficacy and feasibility of bright light therapy on adolescent cancer survivors. Oncology Nursing News spoke with study author Valerie E. Rogers, PhD, RN, CPNP, on the benefit of light therapy for cancer survivors.

Upcoming Webinars and Online Opportunities:

ACCELERATE presents Everything you always wanted to know about Developing Drugs for Children with Cancer* (*But were afraid to ask) on March 30, noon EDT.

CAC2 Member Danielle Leach (National Brain Tumor Society and the Alliance for Childhood Cancer) will present a special edition of this month’s CAC2 All-Member webinar highlighting the online issues and advocacy training and pre-arranged Zoom meetings with Members of Congress and their staff arranged for Action Day 2021 on Thursday, April 1 at noon ET.  Register here:  Action Day 2021: Learn More about How to Advocate Virtually.

CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts).  Access this weeks podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):

• Mary Beth Collins (PREP4Gold)
• Janet Demeter (Jack’s Angels and host of Childhood Cancer Talk Radio)

CAC2 member Janet Demeter (Jack’s Angels)  hosts Childhood Cancer Talk Radio.  Follow that link to access past episodes, or find recent interviews with CAC2 members:

• Jonathan Agin (PREP4Gold)
• Sue Emmer (Children’s Cancer Cause)
• Mike Gillette (Arms Wide Open Childhood Cancer Foundation)

The Gabriella Miller Kids First Pediatric Research Program (Kids First) will host a public webinar on April 13, 2021 at 4:00 pm-6:00 pm EDT. The Kids First investigator, Dr. Elizabeth Engle of Boston Children’s Hospital​ will share findings from the Kids First’s Cranial Dysinnervation Disorders project.

“How Collaboration Is Advancing Research and Clinical Care in Paediatric Cancer” is a jointly organized webinar co-presented by the National Cancer Research Institute and the International Cancer Research Partnership (ICRP).  The webinar will highlight how cancer research funders are currently collaborating to advance paediatric cancer research and clinical care. Join us at 10:00ET on 19 April as the panel discusses these key topics, as well as how to galvanize support for more international collaboration to maximize investments in funding.  The webinar is co-chaired by Dr Julia Chisholm (Chair of the NCRI Children’s Group) and Ms Amy Weinstein (Director of Research at US Pediatric Brain Tumor Foundation), with speakers Professor Vickie Buenger – President at US Coalition for Childhood Cancer, USA and Professor Gilles Vassal – Professor of Oncology University Paris-Sud, France.

Mark your calendar for April 27, 2021, the Alliance for Childhood Cancer for the 10th Annual Childhood Cancer Action Days. This virtual event brings our community together to advocate for important childhood cancer issues currently before Congress.