Blog Posts – Page 6

Survivorship Matters Blog: Surviving Scanxiety in Childhood Cancer Survivorship

November 1, 2021 CAC2

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Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold SCANXIETY – just the word generates response in the childhood cancer community. One might tense up, suck in some air, get nauseous, or experience a tightening of the chest. There is no minimizing the concern that families endure before the scanning process and receiving the results that confirm the potential of cancer in your child’s body. It is a very sensitive, stress-inducing part of the childhood cancer journey. What is Scanxiety? Scanxiety – or scan anxiety – is a relatively new term. We didn’t have such a reference when my [...] Read more

CAC2 News–Ethics Think Tank White Paper Accepted at SIOP 2021

October 18, 2021 CAC2

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Access to the most promising pediatric cancer treatments is often achieved by participating in clinical trials. And private, nonprofit organizations have become a significant source of funding for these trials that are often left behind by industry. Drug development for pediatric cancer has expanded in recent years because nonprofits are stepping up. But federal reporting standards do not apply to nonprofits leaving them to try their best and hope for the best. This lack of formal oversight raised questions for a number of CAC2 members about the ethical, legal, and social commitments between non-profit funders and the patient communities they [...] Read more

CAC2 Member Blog–Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

October 1, 2021 CAC2

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By CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain some of [...] Read more

CAC2 Collaborative Achievement–Foundations Moving Towards A Venture Philanthropy Model

August 13, 2021 CAC2

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This collaborative research effort was due in part to childhood cancer groups coming together as part of CAC2. CAC2 salutes CAC2 Member Organizations The Andrew McDonough B+ Foundation, Jeff Gordon Children’s Foundation, The Children’s Cancer Research Fund, along with other community partners who have joined forces with CAC2 Supporting Organization Oncoheroes Biosciences in a unique effort against childhood cancer. These foundations choose to invest in drug development to get promising drugs across the developmental “valley of death.” The drug development process consists of a long and arduous series of steps to bring a new pharmaceutical drug to the market. The valley of death is […]

CAC2 Member Blog–Delayed Diagnosis for Children with Cancer

July 29, 2021 CAC2

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By CAC2 Member Susan Guisto (Friends of Cathryn Foundation) and Guest Blogger Judith G. Villablance, MD, Children's Hospital Los Angeles Every year, approximately 1 in 10,500 children from birth to 15 years of age are diagnosed with cancer in the United States. Most pediatricians will likely encounter only one to three cases throughout their professional lifetime. Even though a pediatrician may never see a case of cancer in his or her practice, it is important to understand what to look for, how to evaluate patients and to ensure follow-up and timely referrals to specialists. As a result, pediatricians can play [...] Read more

CAC2 Member Blog–Joint-Funding Initiative for Ewing Sarcoma

May 17, 2021 CAC2

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By CAC2 Member Sarah Bartosz, Beat Childhood Cancer This collaborative research effort was due in part to childhood cancer groups coming together as part of CAC2. Nearly one year ago, Gold In September (G9) joined forces with Beat Nb to become Beat Childhood Cancer, a single organization building research infrastructure, funding precision medicine, and growing the conversation to champion gold awareness. With belief in parent impact as a driving force, the expanded Beat Childhood Cancer organization has forged a new collaboration with other CAC2 members. In an effort to find novel ways to support precision medicine efforts, The Spada Pediatric [...] Read more

Guest Blog–How Collaboration is Advancing Research and Clinical Care in Pediatric Cancer

April 1, 2021 CAC2

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By Guest Blogger Dr. Lynne Davies, Operations Manager, International Cancer Research Program It is with great excitement that I write to let you know about the upcoming webinar scheduled for Monday, April 19th at 10am ET, which aims to capture the very essence of why the International Cancer Research Partnership (ICRP) was created. ICRP is a unique alliance of cancer organizations working together to enhance global collaboration and strategic coordination of research. This webinar, entitled “How collaboration is advancing research and clinical care in pediatric cancer,” is jointly organized by ICRP, National Cancer Research Institute Children’s Group and Events […]

CAC2 Member Blog–Surveying Parents to Inform Physicians

January 31, 2021 CAC2

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By CAC2 Member Patti Gustafson, Swifty Foundation For years we looked to medical professionals to tell us what we needed to know to treat our son’s medulloblastoma. We trusted them and we followed their advice. Since 2013, we have been working with families who have lost their child to cancer and we’ve focused our attention on post-mortem tissue donation. In 2017, we held an Investigator’s meeting in Chicago to discuss best practices for the collecting, storing, and sharing of tissue. In 2018, we hosted families from across the country for a Family Forum to discuss their experiences with post-mortem tissue [...] Read more

Guest Blog–Let’s Fight This with Food

January 4, 2021 CAC2

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By Guest Blogger Hilary Woo, Dietetic Intern, Texas Woman’s University Fighting with food has been a motto that I’ve had ever since deciding to pursue a career as a registered dietitian. In fact, the moment I decided to be a dietitian was during a volunteer program in high school at the MD Anderson Cancer Center. I’ve always known that I wanted to work in pediatrics in some field whether it be as a nurse, doctor, dietitian, teacher, etc. However, MD Anderson helped me to find my passion in nutrition, and for that reason as well as personally being impacted by cancer through family members, I’ve […]

CAC2 Member Blog–Better Together

December 1, 2020 CAC2

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By CAC2 Member Carolyn Breinich In 2019, I attended my first CAC2 Summit in Columbus, Ohio. It was there where Mariah, a 40-year survivor, and I, a 26-year survivor, met, connected, and formed a special friendship. We quickly realized that even though we did not have the same form of childhood cancer and even though we were diagnosed at two very different ages, we had so much in common and we understood how each other felt as long-term childhood cancer survivors. We both agreed that it was wonderful to have someone to talk to, since connections and resources had been limited or non-existent for [...] Read more

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