CAC2 Childhood Cancer Community News Digest (July 24-30)

August 1, 2023 Community News, News Digest

Assorted News from the Last Week:

The Senate Appropriations Committee has released its Fiscal Year 2024 Labor-HHS Appropriations bill, and we are excited to report that it included language to fully fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative again this year.

Boston Children’s Hospital has 10 dedicated garden spaces on site. Dotted with statuary of snails, foxes, and frogs, these facilities are specially designed to accommodate the complicated needs of their patients.

The National Cancer Institute is already getting ready for Childhood Cancer Awareness Month.

CAC2 Member Joey’s Wings spotlighted in NCI MyPart August Newsletter.

As the number of young cancer survivors continues to increase, so do the myriad of survivorship issues throughout their life span, including reproductive health concerns.

A new study from the University of Alabama at Birmingham’s Marnix E. Heersink School of Medicine suggests that the economic status of a family could be associated with excessive relapse in children diagnosed with acute lymphoblastic leukemia.

Upcoming Webinars, Online Opportunities, and Meetings:

Triage Cancer will offer a webinar on School & Cancer: Going to College on August 24 at 1:00 ET 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.  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

MyPART will partner with the Life Raft Group to hold the NIH Pediatric and Wild-Type GIST Clinicat the NIH Clinical Center in Bethesda, MD. The clinic brings patients and families together with expert clinicians and researchers. To learn more about the upcoming clinic, please email BJ Thomas, RN at .

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:

Children’s Cancer Cause invites teen, young adult, and adult survivors of childhood cancers to participate in their 2023 survivor survey.

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 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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