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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

CAC2 Member Blog–Be A Voice for the Children

By CAC2 Members Dena Sherwood, Arms Wide Open Childhood Cancer Foundation and Mike Gilette, The Truth 365 Tonight, 1/21, at 8 pm ET:  Join forces with over 700 organizations and groups by helping launch the powerful short film, “Be a Voice for the Children.” Produced by the Emmy® Award-Winning team at The Truth 365, this 8-minute video features interviews with 15 young cancer fighters who share their fears, frustrations, dreams and goals. They also tell viewers exactly what they can do to help make childhood cancer research a national priority. This grassroots effort is for the entire childhood cancer community and designed […]

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CAC2 Member Blog–The Power of Color

By CAC2 Member Tony Stoddard, Sophia’s Fund There are four boxes in this picture; each box contains colors, a pink box, a green box, a rainbow colored box, and a gold box. When I asked people what the pink box meant to them most answered, “breast cancer” When I asked about the green box a great deal of people said, “The environment or recycling” When I asked about the rainbow colored box a lot of people replied, “gay rights” When I asked what the gold box meant to them I received answers such as, “I don’t know, or it means […]

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CAC2 Member Blog–NCI Funding: more lies, damn lies and statistics…

  By CAC2 Member Bob Piniewski, People Against Childhood Cancer The recent post on the National Cancer Institute’s Pediatric Cancer Research and Pediatric Cancer-Related Activities Report discussed NCI’s response to a direct statement from Congress saying “intensify pediatric cancer research” and a direct question from Congress asking for a report “on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act“.  NCI essentially replied…”we’ve got it covered” and was commended by Congress. I respectfully disagree. Until no child dies from cancer and the cure does not cause significant long-term health effects […]

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CAC2 Member Blog–Childhood Cancer Advocacy and Direction: The Tail Wagging the Dog

  By CAC2 Individual Member Jonathan Agin Lately, I have wondered whether or not the childhood cancer community is on the right track overall. By this, I mean, is the direction of the community in terms of raising money, awareness and the manner of funding research the best approach as a whole? I honestly do not know. I raise the question to suggest simply that it may not be and thus, a hard conversation and internal focus might be necessary. Despite the false and misleading suggestion that is presented by the message that 80 to 85 percent of all children diagnosed […]

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