All posts by CAC2

Tissue Donation: The Critical but often Overlooked Piece of the Research Puzzle

Our February CAC2 All-Member webinar focused on the role that tumor tissue can play in childhood cancer research efforts.  Katie Gnatt from Alex's Lemonade Stand Foundation and Ginny McLean from Swifty Foundation welcomed Dr. Patrick Reynolds, Director of The Childhood Cancer Repository, and Dr. Angela Waanders, Director of Precision Medicine Oncology and Executive Board Chair of the Children's Brain Tumor Tissue Consortium to present the webinar. Dr. Reynolds spoke about tissue donation/collection during treatment and Dr. Waanders spoke on post mortem tissue collection.  As we move towards a world with less toxic, more personalized forms of treatment, the availability of different types [...] Read more

Accelerating Drug Development for Children and Adolescents with Cancer

We were pleased to invite CAC2 members, associate members, student members, supporting organizations to our December CAC2 All-member webinar where Susan Weiner (Children's Cancer Cause) hosted Dr. Gilles Vassal, chair of ACCELERATE, an international nonprofit. Dr. Vassal discussed ACCELERATE and its fresh approach to addressing the complex challenges of developing innovative pediatric cancer therapies in the new regulatory environment. View the webinar below. Read more

FundingMatch.com: CAC2’s Searchable Website to Match Like-Minded Organizations

In celebration of Childhood Cancer Awareness Month, we hosted Melisse Skelton (CureSearch) and Oscar Ortiz (SebastianStrong) who used the occasion of our September CAC2 All-member webinar to explain the latest project that is developing in the CAC2 Project Incubator. PUT_CHARACTERS_HERE We learned about a new project proposed by CAC2 members to create a searchable website for organizations with like-minded missions to connect, collaborate, fund research and other projects with a goal of preventing duplication of effort and creating a more coordinated funding effort to support researchers. This database will be used to match key stakeholders (CAC2 foundations) and facilitate collaboration as well [...] Read more

Bright IDEAS for Everyday Living

Our May CAC2 All-member webinar hosted Dr. Robert B. Noll, PhD, Professor of Pediatrics, Psychiatry, and Psychology at the University of Pittsburgh Medical Center. Dr. Noll introduced and explained the Bright IDEAS problem solving technique for families facing the stress of diagnosis, treatment, and beyond. This presentation reviewed the history of efforts to ameliorate a universal psychosocial problem in pediatric oncology (caregiver distress), especially at diagnosis. Dr. Noll explained the approach spearheaded by Bright IDEAS, and shared results from three research trials involving over 1400 caregivers. He also discussed efforts supported by the National Cancer Institute, Children’s Oncology Group, Association of Pediatric Oncologists, [...] Read more

Data Sharing in the Digital Age

Our April CAC2 All-member webinar was hosted by Amanda Haddock (Dragon Master Foundation) who welcomed and introduced fellow CAC2 member Dr. Warren Kibbe, Chief of Translational Biomedical Informatics in the Department of Biostatistics and Bioinformatics, and Chief Data Officer at Duke Cancer Institute.  Dr. Kibbe helped us all understand why we should all care about data sharing, a topic that roared into national prominence in the State of the Union speech in February 2019.  You can view the presentation by clicking the link below The role of publications, release of data, and well-documented scientific plans changed radically as we entered the digital [...] Read more

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