Survivorship Matters Blog–What Is Survivorship?

February 14, 2019
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What is survivorship?  For anyone touched by childhood cancer, the word is intimate, emotional, and somewhat complicated. Whether you are a child in treatment or beyond, parent, friend, practitioner, or researcher, the word is familiar, personal, and identifying. For each person, the word represents something unique. Is it just a label? Is it elusive? Is it a dream never realized? Is it a charge? Is it determinant? A proclamation? A destination? A victory? A curse?  An honor? Survivorship in its entirety embodies all of this.   All versions are worth exploring, if we are going to really embrace what survivorship means […]

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CAC2 Webinar–Childhood Cancer Advocacy: National and International Voices and Action!

February 11, 2019
Webinars No comments yet
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. The panelists graciously allowed us to share the ACC Briefing Slidedeck. Read more

CAC2 Webinar–MyPART: My Pediatric and Adult Rare Tumors Network for Patient Engagement in Rare Solid Tumors Research

December 5, 2018
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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

CAC2 Webinar–Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

November 1, 2018
Webinars No comments yet
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. Brinkman reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

CAC2 Webinar–Understanding and Enhancing the Role of Children with Cancer and their Parents in Pediatric Oncology Drug Development

August 15, 2018
Webinars No comments yet
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

Why Gene Therapy is No Longer a Pipe Dream

July 9, 2018
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CAC2 Research Explained CAC2 members and guests who are also professionals in the field of childhood cancer research find and curate important work and provide pointers and explanations for our general membership. CAC2 Member Laurie Orloski, PharmD, found and curated the article in the link below: https://psmag.com/social-justice/gene-therapy-no-longer-pipe-dream It is well appreciated that cancer is a disease of the human genome, arising from alterations in DNA. In 2017, the US FDA granted its very first regulatory approval of a gene therapy, specifically for the treatment of pediatric and young adult B-cell acute lymphoblastic leukemia: anti-CD19 chimeric antigen receptor (CAR) T-cell immunotherapy [...] Read more

Oncohistones

May 4, 2018
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CAC2 Research Explained CAC2 members who are also professionals in the field of cancer research find and curate important work and provide pointers and explanations for our general membership. Raquel Sitcheran, PhD found and curated the three articles cited below. One of the most remarkable findings in childhood cancer research in recent years has been the discovery that defects or mutations in genes that encode histones are directly linked to tumor growth. Histones are proteins that bind DNA and control how DNA wraps and coils itself to form more condensed chromosomes (see Figure). They not only provide structural support for [...] Read more

CAC2 Webinar–How Patient Driven Philanthropy is Driving Collaboration and Progress

February 14, 2018
Webinars No comments yet
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
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