CAC2 Childhood Cancer Community News Digest (July 17-23)

Assorted News from the Last Week:

In a study reported in The Lancet Oncology, Agulnik et al found that implementation of pediatric early warning systems resulted in reduced clinical deterioration event mortality among children with cancer in resource-limited hospitals in Latin America.

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. 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).

Take Action:

CIRM (California Institute of Regenerative Medicine) is a California state-funded organization to advance gene and cell therapies in California. The grant application (linked here) is specifically for an organization with a California operating license that provides Patient Support Services and could help patients and families access these trials.  A CAC2 Member would be happy to partner with any organization that may have an interest in this application.

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 HELPSAdvocacy 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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