CC Community News Digest (December 14-20)

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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CC Community News Digest (December 7-13)

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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CC Community News Digest (November 30-December 6)

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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CAC2 Member Blog–Better Together

By CAC2 Member Carolyn Breinich In 2019, I attended my first CAC2 Summit in Columbus, Ohio.  It was there where Mariah, a 40-year survivor, and I, a 26-year survivor, met, connected, and formed a special friendship. We quickly realized that even though we did not have the same form of childhood cancer and even though we were diagnosed at two very different ages, we had so much in common and we understood how each other felt as long-term childhood cancer survivors. We both agreed that it was wonderful to have someone to talk to, since connections and resources had been limited or non-existent for [...] Read more

CC Community News Digest (November 23-29)

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

CC Community News Digest (November 16-22)

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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CC Community News Digest (November 9-15)

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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CAC2 Member Blog–Don’t let HOPE die in the US Senate!

By CAC2 Member Joe Baber If the Creating Hope Act (S. 4010) does not pass the Senate by December 11, THIS YEAR we will lose the best tool we have ever had to inspire drug developers to produce Childhood Cancer and Rare Pediatric Disease drugs. This bill has produced 26 drugs in the last eight years, including two childhood cancer drugs. This is half of the four drugs ever approved specifically for childhood cancer. Because of the incentives in this bill, for the first time, we now have several kids’ cancer drugs in development.  We cannot allow this bill to die on the Senate floor!  The House passed a version [...] Read more

CAC2 Webinar–20 Years of Neuroblastoma Research Progress

Have you wondered what has driven the progress in treating relapsed and refectory neuroblastoma patients?  If so, you may be interested in watching our November All-Member Webinar.  CAC2 Member Gavin Lindberg (EVAN Foundation) hosted a speaker program that included Drs. Kate Matthay, Judy Villablanca, and Steve DuBois speaking on:  20 Years of Neuroblastoma Research Progress. These leaders of the New Approaches to Neuroblastoma Therapy (NANT) consortium informed the audience about the progress and challenges associated with developing new strategies for refractory and relapsed neuroblastoma patients. We also learned about the history of this 20 year-old, multi-institution network, their collaborations with the Children’s [...] Read more

CC Community News Digest (November 2-8)

Assorted news from the last week: With Election Day behind us, Congress may be in a better position now to enact another round of stimulus spending — something nonprofits say they desperately need. [NOTE:  this article is gated, but access is free when you register for the site.] Childhood Cancer in Ontario: The 2020 POGO Surveillance Report provides updated childhood cancer statistics on the impact and burden of cancer in children aged 0–14 years in Ontario.  By monitoring and publicly reporting Ontario childhood cancer statistics, POGO ensures the right data are available and being used to drive an effective childhood […]

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