All posts by CAC2

CAC2 Webinar–Better Together: Survivorship Connection

February 17, 2022
CAC2 News, Webinars No comments yet
In our February CAC2 All-Member webinar CAC2 invited the Survivorship Interest Group's Better Together committee to discuss their Project Incubator initiative.  Led by Mariah Forster Olson, and joined by committee members, Nick Giallourakis and Carolyn Breinich, this project would enable survivors and their parents, caregivers, and other family members, as well as nonprofit organizations and healthcare professionals, to be connected with available resources, programs, and services to assist in the lifelong journey of childhood cancer survivorship. This will be accomplished using our Better Together spreadsheet, as well as a unique, personalized approach. Read more

CAC2 Webinar–Why Childhood Cancer Foundations are Adopting the Venture Philanthropy Approach

January 24, 2022
Webinars No comments yet
In our January CAC2 All-Member webinar CAC2 invited the following panelists to speak on Venture Philanthropy: Dean Crowe - Rally Foundation For Childhood Cancer Research, Steve Giusto - Pediatric Cancer Research Foundation, Joe McDonough - The Andrew McDonough B+ Foundation and Dena Sherwood - Arms Wide Open Childhood Cancer Foundation. Venture Philanthropy is a growing trend across many important social issues. For the childhood cancer community, one case study of venture philanthropy is with Oncoheroes Biosciences. Since October 2019, 12 childhood cancer nonprofits have invested in this biotech company that is developing new therapies for children with cancer. In this webinar, [...] Read more

CAC2 Webinar–Multimorbidity from Surviving Childhood Cancer: Using Data to Improve Shared Decision-Making

December 13, 2021
Webinars No comments yet
In our December CAC2 All-Member webinar, Mariah Forster Olson (Neuroblastoma Children's Cancer Society) represented the CAC2 Survivorship Interest Group and hosted Nickhill Bhakta, MD, MPH. Dr. Bhakta.  Dr. Bhakta discussed why the academic approach of thinking about one childhood cancer with one treatment exposure with one chronic condition is not a realistic way of solving long-term disease burden experienced by survivors.  He discussed his work and efforts to engage survivorship groups to guide relevant and meaningful improvements in decision-making between all stakeholders involved in the healthcare of the survivor. Read more

Survivorship Matters Blog: Surviving Scanxiety in Childhood Cancer Survivorship

November 1, 2021
Blog Posts, Survivorship Matters Blog No comments yet
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 Webinar–Finding Families to Serve

October 25, 2021
Webinars No comments yet
  In our October CAC2 All-Member webinar.  Amy Godkin (ASK Foundation) helped us host a panel program that included Kim Buff (Momcology), Heather Held (Pediatric Brain Tumor Foundation), and Robyn Dillon (LCSW, Pediatric Hematology and Oncology, Children's Hospital of Richmond) who spoke on: Finding Families to Serve The panelists shared information on their success in the area of finding families to serve and how you can work with treatment centers to become a trusted partner. Finding Families to Serve Video Finding Families to Serve Handout Read more

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

October 18, 2021
Blog Posts, CAC2 News No comments yet
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–Surveying Parents to Inform Physicians

January 31, 2021
Blog Posts, Member Blogs No comments yet
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
Blog Posts, Explainer Post, Guest Blogs No comments yet

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 […]

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CAC2 Member Blog–Better Together

December 1, 2020
Blog Posts, Member Blogs 1 comment
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

Pediatric Oncology: Summary of Guidances and Meetings

August 31, 2020
Community News, News Digest No comments yet

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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