CAC2 Childhood Cancer Community News Digest (July 29-August 4)

August 5, 2024 Community News, News Digest

Assorted News from the Last Week:

Congratulations to CAC2 Members Autumn Gentry (MACC Fund, Inc) and Mariah Forster Olson (Neuroblastoma Children’s Cancer Society) with inspiration and guidance from CAC2 Board Member Ann Ramer on the publication of the Wisconsin Pediatric Cancer Action Plan.

A tale of resilience: Physician fights Blue Cross of Idaho to cover her baby’s brain cancer treatment with lorlatanib.

The National Institutes of Health’s (NIH) All of Us Research Program has started limited enrollment of children from birth through age 4 at five partner health care organizations across the country. Expanding participation to children offers researchers the opportunity to examine how health and disease progress through the lifespan, and starting with this age group provides the greatest potential for advancing research from infancy to childhood and adolescence.

A joint university study has found a pathway to a therapy program against a rare and deadly pediatric brain tumour. Due to a lack of effective treatment, the tumours—called Posterior fossa group A (PFA) ependymoma—have the highest recurrence rate and poorest prognosis of all childhood cancers.

Integrated drug resistance and leukemic stemness gene-expression scores predict outcomes in large cohort of over 3500 AML patients from 10 trials.

Delving into the clinical impact of NETs in pediatric cancer.

A comprehensive overview of liquid biopsy applications in pediatric solid tumors.

Upcoming Webinars, Online Opportunities, and Meetings:

CCDI Federated Data: Enhancing Data Discoverability (Virtual Presentation), August 13, 2024, 1:00 p.m. – 2:00 p.m. ET

Lori Krause will lead Healing Hearts Wellness Workshops once a month on Wednesdays from 7- 8PM ET on August 28th. Click here for more information and to register.

Join runners and walker on September 8th for the The Great Gold Rush Race 6.0  5K run/3K walk and Family Festival at Lake Central High School! Click here for more information and to register.

Join MIB Agents in Making It Better through TURBO, the Tumor Review Board for Osteosarcoma (for clinicians only).  Click here for more information and to register.

The BrainStorm Summit for pediatric brain tumors will take place at the Mayflower Hotel September 19-21. Click here for more information and to register.

The 15th Annual Congressional Childhood Cancer Summit takes place September 19th on Capitol Hill, from 9:45 AM – 12:00 PM. Register to attend here.

Y’all are invited to “Cocktails for A Cause: You’re Wanted!” hosted by Gold Rush Cure on September 26.  Click here for more information and to register.

This year on September 30 will be the Austin Hatcher Foundation’s 15th annual Celebration of Life and Hope.  Click here for more information and to register.

The CureSearch annual Pediatric Early Development Symposium (PEDS) brings together key experts and stakeholders to address timely challenges and opportunities in pediatric cancer drug development on October 9 and 10.  Click here for more information and to register.

FDA Oncology Center of Excellence (OCE) is hosting an in-person and virtual OCE Pediatric Advocacy Forum on October 15.  Click here for more information and to register.

56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024. Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.

Take Action:

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.

Try out the monthly donation platform dedicated to childhood cancer that helps nonprofits and warrior-parents team up to raise money for research, family support, and advocacy offered at no charge by Hello Cure. 

CAC2 Student Member Na Ouyang, MSN, RN (PhD candidate, Yale School of Nursing) is conducting her dissertation study, which focuses on exploring how clinician-parent communication influences parents’ preparation for their child’s end-of-life and then impacts parental grief in early bereavement. Click here for information and details.  Click here for the IRB Approval document.

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