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CAC2 Webinar–Hearing Loss from Cisplatin—Multiple Perspectives on the New FDA Preventative Treatment Option

Children who receive cisplatin as part of their cancer treatment are at risk for progressive and/or permanent hearing loss as a result of their treatment.  This treatment effect can influence speech and language development, educational achievement, and social-emotional development.  Recently, the FDA approved Pedmark, a Sodium Thiosulfate Injection created by Fennec Pharmaceuticals, as a treatment to help reduce the risk of ototoxicity associated with cisplatin.  November’s CAC2 All-Member webinar provided key information about this important breakthrough in improving the quality of life for childhood cancer survivors who received cisplatin. Attendees learned about the importance of this specific drug approval, the [...] Read more

CAC2 Webinar–Why Foundations Should Collaborate to Fund Research and How the Foundation Match Platform Can Help

As Foundation Match makes its debut, this webinar gave an opportunity to learn more about the platform. In addition, a moderated discussion explored a few of the different motives and approaches that CAC2 member organizations that co-fund research adopted and learned from an investigator about how funding collaboration has the potential to improve the research landscape. Panelists shared why they are excited to join the Foundation Match platform. Panel members include: Donna Ludwinski (Solving Kids’ Cancer) Lisa Ward (Tough2gether Against DIPG/DMG) Julie Guillot (Leukemia & Lymphoma Society Volunteer) Elias Sayour, MD, PhD (Associate Professor of Neurosurgery and Pediatrics, Principal Investigator, [...] Read more

CAC2 Webinar–Better Together: Survivorship Connection

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

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

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

CAC2 Webinar–Finding Families to Serve

  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 Finding-Families-To-Serve-Handout Read more

CAC2 Webinar–Improving Time to Diagnosis for Pediatric and Young Adult Cancer Patients

We were pleased to  present the May All-Member Webinar on May 12.  Sue Guisto (Friends of Cathryn Foundation) and Steve Crowley helped us host a speaker program that included Drs. David Walker and Scott Coven speaking on  Improving Time to Diagnosis for Pediatric and Young Adult Cancer Patients The presentation addressed the reasons why and solutions for detecting symptoms of cancer in children earlier in the diagnosis timeline.  Speakers founded the UK’s Head Smart Program which has effectively addressed delayed diagnosis in children’s brain tumors.     Many parents of children who have or are battling cancer have experienced the frustration [...] Read more

CAC2 Webinar–Liquid Biopsy for Early Cancer Detection in Patients with Cancer Predisposition Syndromes

In April's CAC2 All-Member Webinar, Dr. Brian D. Crompton (pediatric oncologist at Dana Farber/Boston Children's Hospital) and CAC2 Member Greg Harper (Living LFS) presented about the possibilities with emerging technology identifying circulating cancer cells with liquid biopsies, using Li-Fraumeni Syndrome as a case study. The presentation below described the investigation into a liquid biopsy for Li-Fraumeni Syndrome patients and the EDISYN consortium and how nonprofits partnering with medical research centers to help empower patients and families. Read more

CAC2 Webinar–Childhood Cancer Advocacy: Action Day 2021

In April's Special Edition CAC2 All-Member Webinar CAC2 Member Danielle Leach (National Brain Tumor Society and the Alliance for Childhood Cancer) highlighted the opportunity for online issues and advocacy training and pre-arranged Zoom meetings with Members of Congress and their staffs.  Action Day 2021 promises to be very exciting. Thanks to a fully virtual setting, more advocates than ever can participate in effective, meaningful interactions with members of Congress and their staff.  Please register to participate in Action Day activities and advocate virtually for the pediatric cancer community. Action Day Registration Training, April 20, 1:00-3:00 ET Action Day Virtual Hil [...] Read more