CAC2 Webinar– 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

CAC2 Member Blog–Childhood Cancer Data Initiative Symposium Overview

#ccdirocks trended on Twitter as participants at the Childhood Cancer Data Initiative Symposium shared the rocks they selected from among those painted by volunteers from the Dragon Master Foundation. “The rocks brought the children to the meeting, which was so important” –Warren Kibbe By CAC2 Member Caitlin Barrett, CureSearch for Childhood Cancer During the 2019 State of the Union Address, President Donald J. Trump raised the possibility of committing $500M over ten years to pediatric cancer research. The National Cancer Institute (NCI) is developing a plan to use this potential budget infusion to assist in the collection, distribution, and use of [...] Read more

Survivorship Matters Blog–Gratitude and Challenge Co-Exist In Childhood Cancer Survivorship

Survivorship Matters Blog By CAC2 Member Mary Beth Collins   The day that a child completes treatment brings a special kind of glory. Some hospitals even have huge bells to ring to signify the occasion. Regardless of the symbolic gesture, a parent’s spirit hears trumpets sound, now beaming where darkness and fear were ominous for months or sometimes years. One’s life immediately transitions at such times, divorcing from the days of treatment highs and lows, fears of pending death, and the mosaic of so many emotions when parents yearn for children to be healthy enough to complete treatment. It is winning [...] Read more

Survivorship Matters Blog–Childhood Cancer and Bullying – It’s More Common, and Has Greater Impact, Than You Think

Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to childhood cancer and bullying was in 1999 on a neuroblastoma listserve with ACOR (American Cancer Online Resources), the way parents and specialists congregated together before the explosion of social media channels like Facebook, Twitter, or Instagram. My son had only been in treatment a few months, and a parent was sharing an incident that happened on the playground. Her son had been looking forward to getting well enough to return to school, and his fellow classmates decided at recess to taunt him by pretending to be afraid of [...] Read more

CAC2 Webinar–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

CAC2 Webinar–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

Survivorship Matters Blogg–The Academic Impact of Childhood Cancer Treatment Side Effects

Survivorship Matters Blog By CAC2 Member Mary Beth Collins “Your child has to be alive to experience side effects.”  It’s a statement commonly heard by parents reviewing treatment protocol for a child newly diagnosed with a pediatric cancer.  At that moment, one is only focused on desperately keeping a child alive and achieving No Evidence of Disease, or ”NED” as is commonly referenced. At that time, it’s almost impossible to consider quality of life factors when parents are terrified that without treatment they will lose their child.  According to the Coalition Against Childhood Cancer (CAC2) Fact Library, more than 95% […]

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Survivorship Matters Blog–What Is Survivorship?

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'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