Assorted news from the last week:
New York Times op-ed piece by CNN investigative reporter Andrew Kaczynski on the financial toxicity of a childhood cancer diagnosis (gated).
Scientists at St. Jude Children’s Research Hospital have created a laboratory model for studying retinoblastoma driven by inherited mutations in the RB1 gene.
Adam Haydn argues that scientists need a better way to follow and learn from long-term survivors.
Upcoming Webinars and Online Opportunities:
Video links available for the public sessions of the 2021 CAC2 Annual Summit.
Pediatric nurse practitioners Missy Hansen of ICON & Lori Ranney of Children’s Minnesota will share their experiences treating adolescent & young adult populations, cancer treatment options, and the RACE (Research to Accelerate Cures & Equity) Act for Children in a 15-minute Flash webinar on August 25th at 12PM EDT.
Pediatric Brain Tumor Foundation presents Engaging in Advocacy: How to Amplify the Power of Your Story, August 26, 1:00ET. Presenters for this webinar include Sarah Milberg, Director of Government Relations and Advocacy at St. Baldrick’s Foundation, Ginny McLean, Outreach and Communications Director for the Swifty Foundation, and Rene Marsh, CNN’s government regulation and transportation correspondent.
CureSearch is pleased to continue the 2021 CureSearch Virtual Summit Series with the fourth session: Biorepository Form and Function on September 14, from 11:00-2:00ET. This session will provide insight into biorepositories, specifically how tissue is acquired, the types of samples and data that they house, and their accessibility. An open Q&A session will accompany the robust panel discussion.
The Ohio Department of Health has opened registration for the first annual Childhood Cancer Summit to be held ONLINE Sept 16-17. This FREE event is family-focused and includes a range of topics that are important to patients and caregivers at all stages of this experience, regardless of where you live.
Both in-person and virtual CureFest registration is now open! Make your plans for September 25-26.
CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):
- Kayla Funk (Open Hands – Overflowing Hearts)
- CAC2 Childhood Cancer Community News Digest (January 30-February 5)
- CAC2 Childhood Cancer Community News Digest (January 23-29)
- CAC2 Childhood Cancer Community News Digest (January 16-22)
- CAC2 Executive Director Position Now Open!
- CAC2 Webinar–Not For Profit Financial Matters: A Deep Dive into the 990