All posts tagged: Family Support

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–The Art and Science of Navigating the Clinical Trials Landscape for Childhood Cancer

Our June CAC2 All-Member webinar explored the world of clinical trials and helped us understand the important role of clinical trial navigation, a topic that is growing in importance as the number and variety of options for pediatric and adolescent oncology patients has begun to grow. Brenna Carswell, Clinical Trials Navigator at Alex’s Lemonade Stand Foundation, and Michael Wenger, Vice President of Patient Engagement at Trialscope, covered the basic trends in trial enrollment and the challenges and solutions to improving access to clinical trials for children and teens with cancer.  Both Brenna and Michael are cancer survivors! Read more

AACR Sponsored Listening Session with FDA

The American Association for Cancer Research (AACR) and the U.S. Food and Drug Administration (FDA) recorded a listening session on May 27, 2020 for patient advocates to learn more about cancer clinical trials during COVID-19.  The session is about 45 minutes, with the pediatric questions at about minute 25.5, minute 37, and minute 41.   FDA Listening Session:  Oncology and Covid-19

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Members Help Each Other Spread the Word to Families During the Pandemic

CAC2 Members Greg Aune, Max Cure Foundation, and Solving Kids Cancer helped to bring answers to a community in turmoil over the Covid 19 crisis by co-promoting each others’ webinars to get information into more people’s hands: Dr. Gregory Aune “COVID-19: Addressing Family Concerns for Children with Cancer and Survivors” Dr. Timothy Cripe “Latest COVID-19 Insights from Doctors + Stories from the Frontline to inform Childhood Cancer Families & the General Community” Ryan Norton “Stress, Anxiety and Coping with COVID-19: A Conversation for Families in the Childhood Cancer Community”

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Childhood Cancer and Bullying – It’s More Common, and Has Greater Impact, Than You Think

Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to childhood cancer and bullying was in 1999 on a neuroblastoma listserve with ACOR (American Cancer Online Resources), the way parents and specialists congregated together before the explosion of social media channels like Facebook, Twitter, or Instagram. My son had only been in treatment a few months, and a parent was sharing an incident that happened on the playground. Her son had been looking forward to getting well enough to return to school, and his fellow classmates decided at recess to taunt him by pretending to be afraid of [...] Read more

CAC2 Webinar–Bright IDEAS for Everyday Living

Our May CAC2 All-member webinar hosted Dr. Robert B. Noll, PhD, Professor of Pediatrics, Psychiatry, and Psychology at the University of Pittsburgh Medical Center. Dr. Noll introduced and explained the Bright IDEAS problem solving technique for families facing the stress of diagnosis, treatment, and beyond. This presentation reviewed the history of efforts to ameliorate a universal psychosocial problem in pediatric oncology (caregiver distress), especially at diagnosis. Dr. Noll explained the approach spearheaded by Bright IDEAS, and shared results from three research trials involving over 1400 caregivers. He also discussed efforts supported by the National Cancer Institute, Children’s Oncology Group, Association of Pediatric Oncologists, [...] Read more

MyPART: My Pediatric and Adult Rare Tumors Network for Patient Engagement in Rare Solid Tumors Research

December's All-Member Webinar was presented by Dr. Karlyne Reilly, Director of the Center for Cancer Research Rare Tumor Initiative at the National Cancer Institute. Rare tumors pose unique challenges for patients, their families, and the researchers working to develop new therapies. In this webinar Dr. Reilly reviewed these specific challenges and how increased patient engagement in rare tumor research can help to overcome them. MyPART is a patient engagement network being developed in the Center for Cancer Research at NCI focused on children, adolescents, and young adults with rare solid tumors. Dr. Reilly described the network being developed and the goals to [...] Read more