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Assorted news from the last week: Jared Isaacman, 37-year-old founder of Shift4 Payments, is chartering a SpaceX trip to orbit and raffling a seat to a random winner to raise money for childhood cancer research. World Health Organization issued new guidelines on the management of chronic pain in children provide recommended physical, psychological and pharmacological interventions for pain relief in children aged 0-19 years. Telling a child they have cancer and explaining what that means is one of the most difficult conversations you can have with your child. Alice Ann Holland, Ph.D., ABPP, a board-certified Clinical Neuropsychologist and the Research […]

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Assorted news from the last week: Sadly, as the 2020 Childhood Cancer Prevention Report confirms, childhood cancer incidence rates, the number of new cases per 1,000 children, have steadily increased over the last few decades across all racial/ethnic groups. Cancer is now responsible for more than half of all childhood and teenage deaths, making this study all the more urgent. The Houston Chronicle reports: “Another cancer cluster in Fifth Ward and Kashmere Gardens has been identified by a state investigation in a newly released report, which found that children contracted leukemia at nearly five times the expected rate of the […]

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Assorted news from the last two weeks: FDA approval of Pfizer’s XALKORI® (crizotinib) is a major milestone in the treatment of children and young adults with ALK-positive Anaplastic Large Cell Lymphoma. Researchers at Uppsala University have investigated the socioeconomic impact on parents of having a child diagnosed with cancer:  mothers’ incomes fall in the short term and then rise, the adverse financial repercussions on fathers occur later. As the FDA and others take stock of the lessons learned during the Covid-19 pandemic, we should consider elevating the needs of children and embracing approaches that are faster, more innovative, and more […]

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Assorted news from the last two weeks: NCI unveiled two new resources for young people with cancer: tips to help young people facing end-of-life decisions talk with their doctors and make choices about palliative care, advance directives, living wills, and how they want to be remembered. resource to help young people find support after a cancer diagnosis and during cancer treatment. It includes advice on talking with mental health experts, spotting signs of depression, and finding support groups. Study suggests “that children in the U.S. may be treated more intensely compared to children in the U.K., which led to a decreased […]

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Assorted news from the last week: Give Kids the World is reopening on Jan 17, 2021.  Here’s a video they’ve prepared as part of their announcement. COVID19 disrupting pediatric cancer treatments all over, but especially in places like Uganda, where disruption in treatment can be deadly. End-of Year Advocacy Update:  Creating Hope Act has passed in the Senate within the Stimulus Package. It will be reauthorized for 4 more years. In addition the end-of-year omnibus spending bill also included $80 million new childhood cancer research initiatives. This funding agreement included $30 million to fully fund the Childhood Cancer STAR Act, the […]

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Assorted news from the last week: Nature reports that children with cancer with SARS-CoV-2 infection do not appear at increased risk of severe infection compared to the general paediatric population. This is reassuring and supports the continued delivery of standard treatment. Covid-19 surge could lead to another drop in patient visits, doctors fear — and more missed pediatric cancers. Kazia Therapeutics Limited , an Australian oncology-focused biotechnology company, is pleased to announce that it has executed a Letter of Intent with the Pacific Pediatric Neuro-Oncology Consortium (PNOC) to launch a clinical trial of multiple therapies, including Kazia’s investigational new drug, […]

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Assorted news from the last week: Alex’s Lemonade Stand Foundation used Amazon Web Services grant to put 756 terabytes of cancer research data in the cloud to clean up medical research data and build a pipeline of analysis expertise among cancer researchers. Y-mAbs Therapeutics, Inc. has received U.S. Food and Drug Administration (FDA) approval for a new treatment option for a certain type of neuroblastoma. Upcoming Webinars and Online Opportunities: The RACE for Children Act: Early Global Impact and Ensuring Success with Pediatric Champions webinar on Thursday, December 17 10:00ET. Regulators, researchers, industry and patient advocates have come together to […]

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Assorted news from the last week: CAC2 Member Carolyn Breinich explains how her personal experience with childhood cancer and a fortuitous meeting with Mariah Forster Olson at the 2019 CAC2 Summit led them to a friendship and a partnership in Better Together. Y-mAbs Therapeutics, Inc. has received U.S. Food and Drug Administration (FDA) approval for a new treatment option for a certain type of neuroblastoma. A consortium of researchers delved into the molecular details of 218 pediatric brain tumors, analyzing the genes, proteins, and RNA transcription that allow these cancers to proliferate. This analysis, which identified a number of unique [...] Read more

Assorted news from the last week: Data from an ongoing Phase 1 Pacific Pediatric Neuro-Oncology Consortium (PNOC) network study sponsored by the Dana-Farber Cancer Institute showed that patients under 18 years of age with relapsed low-grade glioma that had been treated with DAY101 had notable responses:  Of the eight patients with RAF fusions, two patients achieved a complete response by Response Assessment for Neuro-Oncology (RANO), three had a partial response, and three achieved prolonged stable disease. The median time to response for these patients was only 10.5 weeks, and the most common side effects were skin rash and hair color […]

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Assorted news from the last week: CAC2 Member Joe Baber urges community members to take immediate action to secure Senate passage of the Creating Hope Reauthorization Act, in this guest blog post.  “Because of the incentives in this bill, for the first time, we now have several kids’ cancer drugs in development,” Joe writes. “We cannot allow this bill to die on the Senate floor! The House passed a version of this bill on September 30, but so far, only two of our 100 Senators have cosponsored the Senate version. It will die if it doesn’t pass by December 11.” […]

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