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CAC2 Member Blog–New Report to be Released: Cross-Sector Strategies for Childhood Cancer Prevention

By CAC2 Member Jonathan Agin, Max Cure Foundation I frequently speak of viewing childhood cancer like a bicycle wheel with multiple spokes emanating from the hub in the center.  Each spoke represents a problem or area of focus:  drug development, psychosocial care, early detection, survivorship, research funding, access to treatment, financial toxicity.  Etc., etc.  The spokes of the childhood cancer wheel are interwoven.  Participating in groups like CAC2 allows us to see how interconnected everything in childhood cancer really is. With that said, one area has not truly been intertwined with the other spokes.  This is the issue of prevention, and specifically, prevention of childhood cancer.  Rising [...] Read more

CAC2 Member Blog–#Moonshot4Kids

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

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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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

An Individualized Approach Requires Collaborative Efforts

By Vickie Buenger, President of Coalition Against Childhood Cancer The Coalition Against Childhood Cancer (CAC2) held its first pediatric cancer research conference entitled From Bench to Bedside and Beyond to connect childhood cancer advocates, research funders, clinicians, and scientists from academia and industry. A number of common themes emerged from the various investigators’ presentations. Clearly, most childhood cancers are different than adult cancers, and the relatively small numbers of patients present problems for researchers, sponsors, and others responsible for designing clinical trials. We must remember that these small clusters of patients represent our children. Presenters also agreed that despite progress [...] Read more

CAC2 Member Blog–Triage Cancer

By CAC2 Member Angie Giallourakis, Steve G. Cancer Research Fund TRIAGE CANCER: verb. \trē-ˈäzh,ˈkansər\ the assigning of priority order to projects on the basis of where time, funds, and other resources can be best used, are most needed, or are most likely to achieve success in navigating cancer survivorship issues. I was first introduced to Triage Cancer a few years ago at a Critical Mass: YA (young adult) Cancer Alliance conference where a speaker addressed attendees about Obamacare. It didn’t surprise me that shortly after the conference I began receiving some of the most noteworthy information about programs on cancer survivorship. […]

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CAC2 Member Blog–Three Words I Heard from my Pediatric Oncologist that Still Haunt Me

By CAC2 Member Kayla Funk, Open Hands, Overflowing Hearts   The world stopped spinning for a moment. Time beyond the oncology clinic stood still. Though I knew he was right, I refused to believe my doctor and the words coming out of his mouth. “When neuroblastoma progresses through therapy, we are unable to cure it.” I listened, but I ignored him. I was 19 years old and had spent the last 15 months of my life going through gruesome treatments. The cancer should not have grown. “We will try to suppress your disease for as long as possible, but I don’t […]

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CAC2 Member Blog–“Am I Going to Die?” Reflections of a Survivor

By CAC2 Individual Member Angela Lee I remember ‘that day’ like it was yesterday. The sun was shining on a beautiful spring day in Virginia as my mom and I sat quietly in a hospital room waiting for an oncologist to pay us a visit. I was admitted just days before for a series of lab work and tests that reduced me to feeling like a science project. Although I remember that day very clearly, it was 32 years ago that I heard “It’s a form of cancer” followed by my response “Am I going to die?’. On a beautiful [...] Read more

CAC2 Members Reflections on the National Cancer Moonshot Summit

By CAC2 Member David Frazer, National Pediatric Cancer Foundation “The Moonshot Summit was an event that gathered the principals within the oncology industry under the inspirational leadership of Vice President Biden.   In my opinion, all politics aside, Mr. Biden portrayed the type of leadership necessary to conduct systematic change to defeat cancer.  Historically, he has always been a champion for public health.   The summit was based on collaboration and change, and Mr. Biden facilitated an effective initiative to drive those focus topics. On June 29, the Vice President gathered 300 cancer experts and advocates to Howard University. Of the 14 advocates and foundations […]

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CAC2 Member Blog–Curing Childhood Cancer: “My What If?”

By CAC2 Member Amber Larkin, Noah's Light Foundation Last fall, Amber Larkin stepped onto the stage for 18 minutes at the TEDx Orlando event in the Winter Garden Theater. Most of those in attendance had no idea that the contents of those 18 minutes would reshape the way they think about cancer forever. Amber’s compelling story of her son, Noah, his battle with brain cancer and the hope that has resulted from her tireless work to find a cure brought the audience to laughter, to tears and eventually to their feet. We are pleased to share Amber’s inspiring speech with [...] Read more