CC Community News Digest (August 9-15)

Assorted news from the last week:

The STAR Act was crafted by parents, doctors, and organizations who strive to make a difference for children with cancer and their families, in partnership with legislators and others.  CAC2 Member Danielle Leach explains its importance in this CDC blog post.

Adding temozolomide to a combination of vincristine and irinotecan (VIT) improved tumor response and survival in patients with relapsed or refractory rhabdomyosarcoma in a European phase II trial.

In some children with acute myeloid leukemia, cancer cells have the same amount of DNA changes as healthy blood stem cells. Researchers were surprised to find these children have a poorer chance of survival compared to children whose leukemia has an above-average number of DNA changes.

Initial investigations into the use of CAR T cells for AML led to divergent strategies. Some trials explored their use as a replacement for HSCT, whereas others evaluated them as a bridging strategy.  A new study tries to tease out the differences.

Although more than 80% of children with cancer live in developing countries like Ghana, only about 20% to 30% of them receive such treatment. This is often due to inhibitive costs. In Ghana, where cancer treatment is not covered by the National Health Insurance Scheme, the average expenditure for treating childhood cancer is about US $1000. In the treatment of Leukaemia, it can reach as high as $ 7000 for up to three years. This is far beyond the means of many Ghanaians.

Disease stage is significantly associated with outcomes in pediatric patients with adrenocortical carcinoma (ACC), according to a study published in the Journal of Clinical Oncology.  “Excellent” outcomes were observed for patients with stage I and stage III  ACC, but new treatment options are needed for patients with stage II and stage IV ACC, according to the study authors.

CAC2 salutes CAC2 Member Organizations The Andrew McDonough B+ Foundation, Jeff Gordon Children’s Foundation, The Children’s Cancer Research Fund, along with other community partners who have joined forces with CAC2 Supporting Organization Oncoheroes Biosciences in a unique effort against childhood cancer.

Upcoming Webinars and Online Opportunities:

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.

The FDA will present a two-day workshop entitled Advancing the Development of Pediatric Therapeutics (ADEPT 7).  Its main objective is to discuss opportunities for leveraging complex and innovative trial designs, understand the challenges with their applications, and develop solutions on how challenges in the designs can be overcome.  The workshop will be open to the public.

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.