All posts by CAC2

Surviving Scanxiety in Childhood Cancer Survivorship

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

Finding Families to Serve

Please Note: This is best viewed In Google Chrome   We were pleased to invite CAC2 members, associate members, student members, and supporting organizations to our October CAC2 All-Member webinar.  Amy Godkin (ASK Foundation) helped us host a panel program that included Kim Buff, Founder, Momcology; Heather Held, Family & Community Outreach Manager, Pediatric Brain Tumor Foundation; and Robyn Dillon, LCSW, Pediatric Hematology and Oncology, Children's Hospital of Richmond who spoke on: Finding Families to Serve (Click the title above to view the video) The panelists shared information on their success in the area of finding families to serve and how you can work [...] Read more

CAC2 Ethics Think Tank White Paper Accepted at SIOP 2021 (on Saturday, October 23rd)

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

Surveying Parents to Inform Physicians

By Guest Blogger CAC2 Member Patti Gustafson 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

Let’s Fight This with Food

By: 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 been drawn […]

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Better Together

By Guest Blogger 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 [...] Read more

Pediatric Oncology: Summary of Guidances and Meetings

Guidances Acute Myeloid Leukemia: Developing Drugs and Biological Products for Treatment Pediatric Study Plans: Content of and Process for Submitting Initial Pediatric Study Plans and Amended Initial Study Plans Cancer Clinical Trial Eligibility Criteria: Minimum Age Considerations for Inclusion of Pediatric Patients    Meetings 15 Sep: Pediatric Advisory Committee Will discuss pediatric-focused safety reviews for medications related to acute dystonia associated with  ADHD, acute hyperkinetic movement disorder associated with combined use of ADHD stimulants and  antipsychotics 22-23 Oct: Pediatric Dose Selection Public Workshop ($50) Will discuss current methods and future approaches, and how to address gaps in pediatric dose selection  that […]

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An Ounce of Prevention, A Lifetime of Health: Childhood Cancer Prevention Initiative

Dr. Margaret Kripke, Professor of Immunology and Vivian L. Smith Chair Emerita at the University of Texas M.D. Anderson Cancer Center and Dr. Philip Landrigan, Professor of Biology at Boston College and Director of the Program for Global Public Health and the Common Good joined CAC2 Members Jonathan Agin (Max Cure Foundation), Mary Beth Collins, and Anne Robertson to discuss a soon-to-be unveiled childhood cancer prevention initiative. This informative webinar allowed CAC2 members to learn the basics about preventing childhood cancer and the vulnerabilities to environmental toxins and current treatment regimens experienced by children. The panel discussion provided an overview about [...] Read more

Cancer in Children with Birth Defects: What Can We Learn from Population-Based Studies 

Our April CAC2 All-Member webinar hosted by Donna Ludwinski (Solving Kids Cancer) introduced Drs. Jeremy Schraw and Philip Lupo of Baylor College of Medicine who spoke about their research on nonchromosomal cancer predisposition. Studies show that birth defects are one of the strongest risk factors for cancer in children, but who is at risk and why? To address these questions, the presenters performed the largest investigation of cancer risk in children with birth defects to date. They discussed how a child’s risk of cancer relates to the type and number of birth defects they are diagnosed with, evidence for possible genetic and [...] Read more

Tissue Donation: The Critical but often Overlooked Piece of the Research Puzzle

Our February CAC2 All-Member webinar focused on the role that tumor tissue can play in childhood cancer research efforts.  Katie Gnatt from Alex's Lemonade Stand Foundation and Ginny McLean from Swifty Foundation welcomed Dr. Patrick Reynolds, Director of The Childhood Cancer Repository, and Dr. Angela Waanders, Director of Precision Medicine Oncology and Executive Board Chair of the Children's Brain Tumor Tissue Consortium to present the webinar. Dr. Reynolds spoke about tissue donation/collection during treatment and Dr. Waanders spoke on post mortem tissue collection.  As we move towards a world with less toxic, more personalized forms of treatment, the availability of different types [...] Read more

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