CAC2 Childhood Cancer Community News Digest (February 19-25)

Assorted News from the Last Week:

Penn State students have raised more than $16.9 million for pediatric cancer patients in the annual 46-hour dance marathon known as Thon.

More than 225 advocates from 32 states participated and shared their stories, asking for congressional support for important legislation and funding for childhood cancer.  CAC2 members, Alliance members, and many others across the country had their voices heard.

U.S. Congressman Michael McCaul (R-Texas), along with Ranking Member of Energy and Commerce’s Health Subcommittee Anna Eshoo (D-Calif.) and Representatives Gus Bilirakis (R-Fla.), Lori Trahan (D-Mass.), Michael Burgess (R-Texas), and Nanette Barragán (D-Calif.), introduced the Creating Hope Reauthorization Act of 2024. This legislation would reauthorize McCaul’s Creating Hope Act of 2011, which expanded the FDA priority review voucher program to incentivize pharmaceutical companies to develop new drugs for children with rare pediatric diseases.

In Nature: Liquid biopsy guides successful molecular targeted therapy of an inoperable pediatric brainstem neoplasm.

The NIH’s program All of Us has recruited more than 750,000 volunteers to provide survey responses about their health, medical records, and if they’re willing, biological samples for molecular and genetic testing. Genetic data from some participants have been available for researchers since 2020, but the new release this week includes the whole genome sequences of nearly 250,000 participants — half of whom are of non-European ancestry.

More than 134,000 cancers might have gone undiagnosed during the first 10 months of the COVID-19 pandemic, according to a study of national trends in cancer incidence.

Upcoming Webinars, Online Opportunities, and Meetings:


FDA’s Rare Disease Day will be on Friday, March 1, 2024, and registration is open for this virtual event. This year’s Rare Disease Day is dedicated to patients and health care professionals.

The United States Patent and Trademark Office (USPTO) is hosting a series of Public Engagement Partnership meetings with the first one on March 1 from 1:00-5:00 pm ET. USPTO wants to connect with individuals, advocacy groups, public interest focused nonprofits, and academics in order to exchange ideas, experiences, and insights related to patent policies and procedures.

Healing Hearts was created by grieving parents who needed a haven of love and comfort along with the hope of healing. Together, we support each other in creating a life worth living, for and with our children. Healing Hearts is for Osteosarcoma Bereaved families only and meets once a month on Wednesdays from 7- 8PM ET on the following dates:  March 27 and April 24.  For information and to register.

The 21st International Symposium on Pediatric Neuro-Oncology (ISPNO 2024) from June 29 – July 2, 2024, and the Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) from June 28-29, 2024, which will take place in Philadelphia, PA.  For 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.

Recent Recordings:

In this recording, the pLGG EL-PFDD Meeting, hosted by the Pediatric Brain Tumor Foundation on February 23rd, provided a unique opportunity for pediatric low-grade glioma patients, survivors, their families, and caregivers to speak directly to the U.S. Food and Drug Administration (FDA), pharmaceutical companies, and the public about their current and past experiences with pLGG and the impact the disease has had on their daily lives.

Take Action:


The Childhood Cancer Data Initiative (CCDI) is seeking input to assist NCI in using electronic health record (EHR) data to accelerate progress in childhood cancer research. You are invited to respond to our latest Request for Information (RFI) to share your capabilities in automated EHR data entry and extraction. Submissions will be accepted until February 29, 2024.  Submit a response to share your tools, clinical workflows, and approaches for entering and extracting EHR data in a structured format. You may also respond with insights on how existing tools for data capturing, extraction, and transformation in adult cancer research can be used to support childhood and rare cancer research. Feel free to reach out to Subhashini Jagu with questions.


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