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Save the Date! Action Days 2023 Returns to Washington, D.C.

December 8, 2022
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By Guest Blogger Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer and Director of Government Relations and Advocacy for the St. Baldrick’s Foundation Thanks to advocates like you, we have been able to make great progress on important childhood cancer issues before Congress. The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023. Action Days gives you an opportunity to speak with your members of Congress and their staff to advocate for important childhood cancer issues before Congress. Sharing your story next […]

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CAC2 Childhood Cancer Community News Digest (November 28-December 4)

December 5, 2022
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Assorted News from the Last Week: "I’d like to introduce you to Josh. . .  Josh, a sound engineer, is also a childhood cancer survivor who lives with profound hearing loss. Josh has a deep love of music. It has been a constant struggle for most of his life. The side effects of chemotherapy treatment robbed him of quality of life." High radiosensitivity of the meninges was observed in pediatric patients with cancer treated before 10 years of age, supporting the use of reduced dose whole brain irradiation and the prioritization of approaches that limit radiation exposure in healthy tissue, [...] Read more

CAC2 Childhood Cancer Community News Digest (November 21-27)

November 28, 2022
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Assorted News from the Last Week: CAC2 Member Mary Beth Collins explains the importance of the new FDA approval of Pedmark:  "With the FDA’s recent approval of Pedmark (an injectable formulation of sodium thiosulfate ("STS"), children are protected from cisplatin’s ototoxicity.  This development is substantial for children in treatment because it maintains their hearing, providing a better quality of life." Hayley Arceneaux became the youngest American to go to space last year after she spent three days in orbit on Space-X's Inspiration rocket. She is telling her story in a new book. Pediatric patients who receive central nervous system (CNS)-directed treatment for [...] Read more

CAC2 Childhood Cancer Community News Digest (November 14-20)

November 21, 2022
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Assorted News from the Last Week: CAC2 Member Joe Baber reflects on the Gabriella Miller Kids First 2.0 legislation pending in Congress:  "We’re all thankful when there are lifesaving therapies and at the very same time, we are fearful of relapse, side effects of the drugs, chemotherapy, radiation, surgery and even death.  These contrary and parallel emotions seem to be linked in partnership throughout the childhood cancer experience." This month, Dr. Gregory Reaman was named by the Childhood Cancer Data Initiative (CCDI) as the new Scientific Director. In this role, Dr. Reaman will develop, direct, and coordinate CCDI programs and [...] Read more

Community News–Childhood Cancer Data Initiative Welcomes Dr. Gregory Reaman as Its New Scientific Director

November 17, 2022
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This month, Dr. Gregory Reaman was named by the Childhood Cancer Data Initiative (CCDI) as the new Scientific Director. In this role, Dr. Reaman will develop, direct, and coordinate CCDI programs and initiatives, as well as provide scientific oversight and recommendations to drive CCDI’s vision and progress. He comes to NCI most recently from the US Food and Drug Administration, with a career dedicated to caring for children with cancer and decades of leadership experience improving childhood cancer research. The CCDI team isn’t the only part of CCDI that expanded. NCI released initial data from the CCDI Molecular Characterization Initiative, [...] Read more

CAC2 Childhood Cancer Community News Digest (November 7-13)

November 14, 2022
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Assorted News from the Last Week: The FDA has approved brentuximab vedotin (Adcetris) in combination with doxorubicin, vincristine, etoposide, prednisone, and cyclophosphamide (AVE-PC) in pediatric patients aged 2 years and older with previously untreated, high-risk classical Hodgkin lymphoma.  Read more:  Administration of a targeted therapy for children with high-risk Hodgkin lymphoma (HL) was found to significantly decrease relapse rates in a large multicenter clinical trial conducted by the Children’s Oncology Group (COG) and published in The New England Journal of Medicine. Researchers have used CRISPR/Cas9 technology to engineer donor T cells to try to treat seriously ill children with resistant [...] Read more

Guest Blog–The Fit for Filing Group at ACCELERATE

November 14, 2022
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Blogged with permission and thanks by the ACCELERATE Fit for Filing Working Group   The ACCELERATE PLATFORM’S Fit for Filing (FFF) group was formed in 2019 to explore the issues of academic-led trials that typically do not produce data that is fit-for-filing to gain marketing approval by regulatory agencies.   The scope of Fit for Filing (FFF) is to develop best principles on how to design and deliver an academic or academic & industry collaborative trial with a dataset that can be included in a package for regulatory filing.Objectives of the FFF working group are: Define the barriers and propose solutions to ensure […]

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CAC2 Childhood Cancer Community News Digest (October 31-November 6)

November 7, 2022
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Assorted News from the Last Week: November is National Family Caregivers Month.  The President Joe Biden honored family caregivers for all they do for the nation with a Presidential Proclamation. "No one should have to choose between a paycheck and looking after a loved one. My Administration is committed to easing that squeeze on working families and getting caregivers the resources and respect they deserve. The Department of Health and Human Services’ National Strategy to Support Family Caregivers outlines nearly 350 actions the Federal Government can take to support family caregivers’ health, well-being, and financial security. Our American Rescue Plan [...] Read more

Guest Blog–New FDA Draft Guidance Aims to Protect Children who Participate in Clinical Trials

November 5, 2022
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The U.S. Food and Drug Administration issued a draft guidance that, when finalized, will provide the agency’s perspective on the ethical considerations for including and protecting children in clinical trials. The draft guidance is intended to assist industry, sponsors and institutional review boards (IRBs) when considering the enrollment of children in clinical investigations of drugs, biological products and medical devices.  “Children need access to safe and effective medical products and health care professionals need data to make evidence-based decisions when treating children. However, children are a vulnerable population who can’t provide consent for themselves and are afforded additional safeguards when participating in […]

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CAC2 Childhood Cancer Community News Digest (October 24-30)

October 31, 2022
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Assorted News from the Last Week: CBS "Sunday Morning" contributor Kelefa Sanneh talked with CAC2 Members Kari and Tom Whitehead and their daughter Emily about how they defeated her cancer and were joined by Dr. Siddhartha Mukherjee, a leading cancer specialist and author of the new book, "The Song of the Cell: An Exploration of Medicine and the New Human." CAC2 Member Cindy Campbell and her family spoke with NBC News’ Tom Llamas to tell the story of how the Campbell family has spent the past decade honoring their son’s life and legacy through a foundation in his name to raise [...] Read more
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