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Childhood Cancer Advocacy: National and International Voices and Action!

February's All-Member Webinar was presented by Ruth Hoffman, President of Childhood Cancer International and Danielle Leach, Co-Chair of the Alliance for Childhood Cancer. This CAC2 webinar contains details about this year’s celebration of International Childhood Cancer Day happening mid-February and about Childhood Cancer Action Days scheduled this year for March, 26-27 in Washington, DC. For your convenience and so that you can access specific links, the presentation slide decks are posted below. The panelists graciously allowed us to share their slide deck as well. ICCD webinar for CAC2 The panelists graciously allowed us to share the ACC Briefing Slidedeck. ACC Briefing Webinar [...] Read more

MyPART: My Pediatric and Adult Rare Tumors Network for Patient Engagement in Rare Solid Tumors Research

December's All-Member Webinar was presented by Dr. Karlyne Reilly, Director of the Center for Cancer Research Rare Tumor Initiative at the National Cancer Institute. Rare tumors pose unique challenges for patients, their families, and the researchers working to develop new therapies. In this webinar Dr. Reilly reviewed these specific challenges and how increased patient engagement in rare tumor research can help to overcome them. MyPART is a patient engagement network being developed in the Center for Cancer Research at NCI focused on children, adolescents, and young adults with rare solid tumors. Dr. Reilly described the network being developed and the goals to [...] Read more

Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

October's All-Member webinar was presented by Tara Brinkman, PhD, Assistant Member in the Departments of Epidemiology and Cancer Control and Psychology, St. Jude Children’s Research Hospital. Dr. Brinkman's recent, first-of-its- kind study sheds light on the degree of achievement of independence by survivors of pediatric brain tumors. Her talk highlighted the prevalence of independence and risk factors associated with non-independence in adult survivors. As part of the presentation, Dr. Brink reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

Understanding and Enhancing the Role of Children with Cancer and their Parents in Pediatric Oncology Drug Development

This month's webinar was presented by Stacy Crane, Predoctoral Fellow at Indiana University School of Nursing.  She described the experience of participating in a Phase I clinical trial from the perspective of the parents of children battling cancer. While overall, parents do not regret their child participating in a phase I clinical trial and would recommend participation to other parents of children with cancer, there are implications for clinicians and researchers who work with children with cancer and their families. One way to improve experiences in early phase clinical trial participation is to ensure that the side effects that impact the patients during these [...] Read more

Pediatric Cancer Advocacy Success and Plans for Childhood Cancer Action Days

Let's Get Geared Up for Action Day!   In our April CAC2 All-Member webinar, Danielle Leach, Co-Chair of the Alliance for Childhood Cancer presented information about the status of the STAR Act which passed through the Senate last month and about Childhood Cancer Action Days scheduled for later this month in Washington DC. Dr. Volchenboum graciously allowed us to share his slide deck as well. Pediatric_Data_Commons Read more

How Patient Driven Philanthropy is Driving Collaboration and Progress

In February’s All-Member webinar, CAC2 members Joanne Salcido (Pediatric Brain Tumor Foundation) hosted Kristin Schneeman, Director of Programs at FasterCures, a center of the Milken Institute. Philanthropy can play an critical role as a catalyst for change in the medical research and development ecosystem. Over the last decade, many patient-driven foundations – big and small, old and new – have been taking a more strategic and entrepreneurial approach to their role as research funders and are driving collaboration and progress for the patients they represent. In this webinar, Schneeman,presented about some of the new funding models and collaborative activities in which foundations [...] Read more

Germline Predisposition to Pediatric Cancer: It’s More Common Than You Think

In December's All-Member webinar, CAC2 members Ginger Diamond (Childhood Cancer Awareness Group of Coffee County) and Joanne Salcido (Pediatric Brain Tumor Foundation) hosted Dr. Sharon Plon from the Baylor College of Medicine, Texas Children's Hospital and Dr. Todd Druley of Washington University in St. Louis, speaking on pediatric cancer predisposition and genetic susceptibility. During this webinar, Drs. Sharon Plon and Todd Druley covered evidence suggesting that pediatric cancer, unlike adult cancers, has a significant contribution from germline genetic changes that skew normal childhood development. They also highlighted the approaches underway in the laboratory and clinic to address this issue including [...] Read more