CAC2 Childhood Cancer Community News Digest (June 19-25)

June 26, 2023 Community News, News Digest

Assorted News from the Last Week:

NCI’s Childhood Cancer Data Initiative has grown since its launch in 2019. Read about the initiative’s activities, successes, and priorities for the future in the most recent issue of the Journal of Clinical Oncology. 

Just-released Voice of the Patient report “A Ticking Time Bomb” stems from an Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on reducing cardiac late effects in pediatric cancer survivors, held in September 2022.

U.S. News and World Report on best children’s cancer hospitals released.

The National Library of Medicine (NLM) has launched the modernized ClinicalTrials.gov website, which is the result of a multi-year effort to deliver an improved user experience on an updated platform that will accommodate growth and enhance efficiency.

A new measurement tool helps analyze the survival rate of children with cancer, but also the quality of survival.

Older generic chemotherapy drugs remain scarce (including cisplatin and carboplatin), forcing doctors to put a priority on the patients who have the best chance of survival. (gated)

Pediatric brain tumor survivor Kelsey Tainsh gave the keynote address at the Hematology/Oncology Pharmacy Association Annual Conference 2023 in April.

The Comprehensive Cancer Survivorship Care Act introduced.  The bill sets out to improve patients’ oncology care and quality of life during active treatment and recovery by establishing standards and programs to manage a patient’s diagnosis, active treatment, and long-term follow-up care.

Upcoming Webinars, Online Opportunities, and Meetings:

Registration is open for the free AACR Virtual Patient Advocate Forum The Evolution of FDA Regulatory Science and its Impact on Cancer on Tuesday, June 27, 2023 from 1:00-2:30 p.m. ET.  Learn more and register.

CCDI be demonstrating how to use the CCDI Hub and CCDI Childhood Cancer Data Catalog in a CCDI webinar on June 29 from 2:00–3:00 p.m. ET. Learn more and register.

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: School & Cancer: Going to College: Learn about navigating college and cancer, including how to get help through accommodations, working with professors, and tips for a smooth transition from high school to college.  August 24 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:

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):

A presentation about the research on structural birth defects and childhood cancer made possible by the Kids First program, was presented by Dr. James Coulombe of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Dr. Philip Lupo of Baylor College of Medicine talked about how birth defects like congenital heart disease can increase the risk of certain types of childhood cancers.

CAC2 Member Ms. Ellyn Miller, President and Founder of the Smashing Walnuts Foundation, and Gabriella Miller’s mother, was the “Voice of the Participant” at Kids First telling her family’s story and sharing Kids First advances.

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, 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.

 

Become a member of the Northwest Indiana Cancer Kids Awareness and Advocate Family. Together, we can make a difference! Join here www.nwicancerkids.org/nickmembers

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