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Guest Blog–Kids First Second Chance: Engaging the Community in Fostering Pediatric Genomics Research

March 2, 2020
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By Guest blogger Valerie Cotton, Kids First Program Manager, NICHD Childhood cancers and structural birth defects have profound, lifelong effects on children and their families. Birth defects are the leading cause of death in the first year of life, and cancer remains the leading cause of childhood disease-related mortality beyond the first year of life, according to the Centers for Disease Control and Prevention. Moreover, a child born with a birth defect is at a higher risk for childhood cancer, suggesting these conditions may be caused by shared genetic pathways. However, limited data and resources are available to investigate potential genetic [...] Read more

CAC2 Member Blog–#Moonshot4Kids

March 1, 2020
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By CAC2 Member Janet Demeter, Jack's Angels Did you know that brain cancer is the leading cause of death in children with cancer?  It’s also one of the least-funded areas of cancer research.  DIPG, diffuse intrinsic pontine glioma, is perhaps the deadliest of them all.  The experience of DIPG is a terrible wake-up call:   with no viable solutions, the discovery that profits and numbers count more than the value of your child’s life, DIPG exemplifies in a profound way the experience that so many children with cancer and their families endure–to watch their children die in utter helplessness. We would [...] Read more

CAC2 Member Blog–Except for Tissue

February 29, 2020
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By CAC2 Student Member Nikki Lyons I always knew I wanted to be a scientist. This meant that when I was younger, I loved watching movies and shows featuring some scientific aspect. Their endless supplies of anything they could possibly need, the sparks of brilliance and the immediacy of working experience piqued an interest but were as far from the truth of the scientific process as they could be. Science is slow and arduous; it can go wrong at any step of the way. The first steps of science are pretty simple, observe something you’re interested in and ask a […]

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Guest Blog–The 4 C’s of the Holiday Season: Chess, Competition, Comaradery, Charity

January 10, 2020
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By Guest blogger C. Davis Buenger Can blitz improve your chess? Maybe yes, maybe no.  Can playing blitz could change the world?  Team Berlin thinks so! Last month, Team Berlin, an adult chess team in Ohio took up a challenge I suggested to play a three-week holiday competition:  whoever improved their chess.com blitz rating the most between December 12 and January 4 would win.  To make things more meaningful, each player picked a charity to play for, with the donation pool staked by the participants going to the winner’s choice of charity. Seven team members--Davis Buenger, Scott Harkema, Zach Kountz, [...] Read more

CAC2 Member Blog–Childhood Cancer Data Initiative Symposium Overview

August 20, 2019
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#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

June 28, 2019
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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

June 3, 2019
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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

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

April 2, 2019
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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?

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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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
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