CAC2 Childhood Cancer Community News Digest (July 10-16)

July 17, 2023 Community News, News Digest

Assorted News from the Last Week:

 

Adolescents and young adults (AYAs) with acute lymphoblastic leukemia (ALL) who are overweight or obese and are treated with asparaginase-containing pediatric regimens, are likelier to have poorer outcomes than those with normal body mass index.

In Gabrielle Zevin’s novel Tomorrow, and Tomorrow, and Tomorrow, video games are channels of healing, imagination and love. The book spans more than 30 years — from the 1980s to the 2010s — and follows the journey of two friends who create video games together, one a boy injured in a horrible car wreck, the other a sibling of a child with cancer.

The National Library of Medicine revealed a modernized version of ClinicalTrials.gov in mid-June after a several-year effort to increase user-friendliness and efficiency. See the new site through the link above and this Q&A about the enhancements.

Adolescent, young adult survivors of kidney cancer at high risk for cardiovascular disease.

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.

Rein in Sarcoma Party in the Park on Monday, July 31 from 5:00 - 8:00 PM. The “party” provides an opportunity to learn more about sarcoma cancer research, patient support, and education, as well as enjoy children’s activities, entertainment, free carousel rides, silent auction and much more.  Learn more and register.

Zoefia Alexandria Green Heart Gala, beautiful night of elegance and celebration to raise funds and awareness for Childhood Cancer/ Brain Cancer, September 15 at 7:00 pm ET.  Learn more and register.

Registration for CureFest 2023 is now open! Register today at:  www.curefestusa.org

Register for the 55th SIOP in Ottawa, Canada on October 11-14 before July 18, 2023 for early bird pricing. Experience 4 outstanding days of cutting-edge science, engaging debates, and networking with world-renowned experts.  Learn more and register.

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:

Friend of CAC2 Art Caplan reviews a tough decision from his ethics caseload:  A Teenage Girl Refuses More Cancer Treatment; Her Father Disagrees.

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:

Zach’s Bridge is looking for bereaved parents and caregivers to complete a survey to help families facing advanced pediatric cancer. The survey takes less than 5 minutes and will help improve the services that Zach’s Bridge Peers provide. Please share with your organizations and bereaved families you know. Take the survey

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.

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.

The FDA and CTTI announced the call for applications for new members of the Patient Engagement Collaborative(PEC). The PEC is an ongoing, shared forum in which the patient community (PEC members), FDA, and CTTI discuss a variety of topics such as improving communication, education, and patient engagement related to medical product regulation.  This announcement is open to receive a maximum of 75 applications. Applications will be accepted until 11:59 p.m. Eastern Time on August 14, 2023 or until 75 complete applications are received, whichever happens first.  Interested candidates are encouraged to apply early.

 

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