CAC2 Childhood Cancer Community News Digest (August 26-September 1)

Assorted News from the Last Week:

White House issues proclamation on National Childhood Cancer Awareness Month, 2024

CAC2 Member Blog–Wisconsin Pediatric Cancer Action Plan Published!

Improving care in pediatric oncology: why patient- and family-centered support is essential throughout the cancer survivorship continuum.

FDA grants Orphan Drug designation to Opaganib for neuroblastoma.

The Rare Cancer Initiative is enabling the research community to access more clinical data to improve health outcomes for children diagnosed with rare cancers. Dr. Mary Frances Wedekind, a pediatric oncologist and assistant research physician with the Pediatric Oncology Branch at NCI, explains how the Childhood Cancer Data Initiative follows children, teens and young adults for many years to collect key information about their cancer diagnosis, imaging and treatments.

A note from NCI Director Kimryn Rathmell about growing the cancer research pipeline by expanding opportunities.

Tisagenlecleucel is increasingly used as earlier treatment for younger patients with B-cell acute lymphoblastic leukemia and consequently the use of hematopoietic stem cell transplantation has decreased over the same time.

This September, Major League Soccer (MLS) and Continental Tire are teaming up during Childhood Cancer Awareness month for the 11th annual “Kick Childhood Cancer” (KCC) campaign to raise awareness and funds for pediatric cancer research and treatment.

Research framework for understanding financial hardship in childhood cancer that reflects the voices of stakeholders, including parents and caregivers, from diverse global contexts.

Upcoming Webinars, Online Opportunities, and Meetings:

Geneva’s iconic jet d’eau will be illuminated in gold on the night of September 6th to mark international childhood cancer awareness month.

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.

The Food and Drug Administration (FDA) will hold a virtual Patient Engagement Advisory Committee (the Committee) meeting on Patient-Centered Informed Consent in Clinical Study on October 30 from 10:00-5:00 ET.  Click here for more information and to register .

Machine learning in paediatric haematological malignancies: a systematic review of prognosis, toxicity and treatment response models.

Past Recordings:

Study investigates novel therapy for penetration of pediatric brain tumors.

A discussion of key pediatric brain tumor presentations that “think outside the box.”

 

Take Action:

There’s already an amazing team of volunteers ready to make a difference at CureFest 2024! However, there are still some areas where they need additional help. If you’re able to volunteer, please click on the link to see where your support is most needed: Volunteer Sign-Up. For any questions, feel free to reach out to Kristen Alexander at

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.

NIH recently announced a Request for Information to gather community input on additional proposed actions to accelerate the career transition of postdoc scholars into thriving biomedical research careers. Please note that feedback will be accepted electronically until October 23, 2024.  See the Open Mike Blog for additional information.

CAC2 Innovation Council Recommendation: Lions Club International Foundation’s Childhood Cancer Grant Program

Overview of the Opportunity:  Lions Club International has a grant program designed specifically for Childhood Cancer projects.  Grants are available to Lions districts and multiple districts in amounts from US $10,000 to US $150,000.  Projects must be implemented in coordination or collaboration with existing government or charitable childhood cancer medical facilities.   Read on for more information.

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