CC Community News Digest (July 19-August 1)

Assorted news from the last two weeks:

CAC2 Member blog post:  “Diagnostic delays may be improved with targeted programs. The HeadSmart program, a web-based national awareness campaign in the United Kingdom decreased time to diagnosis for pediatric brain tumors by half (3). HeadSmart included partnering with parents via “safety netting.” When symptoms did not lead to an immediate diagnosis, plans were made with the patient/parent about next steps if the problem did not resolve. This included return visits within a given time and specialist referrals if symptoms persisted or worsened.”

Scientists at St. Jude Children’s Research Hospital have found a link between post-cancer treatment frailty and neurocognitive decline in young adult childhood cancer survivors. A paper on this work was published today in the Journal of Clinical Oncology.

Geneticists have discovered how a specific genetic mutation (H3K27M) causes a devastating, incurable childhood cancer, known as diffuse midline glioma (DMG), and — in lab studies working with model cell types — successfully reverse its effects to slow cancer cell growth with a targeted drug.

Individuals born with the p53 mutation have a 90% chance of developing cancer in their lifetimes, a higher rate than with most mutations. Many experience their first tumor in early childhood or as teenagers, and develop multiple malignant tumors if they survive their initial cancer. Before my brother died, he had a half dozen or so cancers, including lung, prostate, and pancreatic cancer. My mom had breast cancer, my sister Angela had cancer in her abdomen, and my sister Gina had lung cancer, though a different type than my brother. One of his sons, Charlie, had his first cancer in his cheek at age 2, then had colon cancer when he was 30 and died of cancer at age 39 — seven months before his dad/my brother died — after having a leg and hip amputated in a futile effort to save him.

A new drug approval by the Food and Drug Administration (FDA) is expected to help address a critical need for children with leukemia who develop an allergy to a key component of their treatment.  About 15% of children with the most common type of childhood cancer, acute lymphoblastic leukemia (ALL), will develop an allergic or other immune reaction to the chemotherapy drug pegaspargase (Oncaspar).

Advocates celebrate new law ensuring Hoosier access to Chicago children’s hospitals.

Upcoming Webinars and Online Opportunities:

Video links available for the public sessions of the 2021 CAC2 Annual Summit.

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):