CAC2 Childhood Cancer Community News Digest (November 14-20)

Assorted News from the Last Week:

CAC2 Member Joe Baber reflects on the Gabriella Miller Kids First 2.0 legislation pending in Congress:  “We’re all thankful when there are lifesaving therapies and at the very same time, we are fearful of relapse, side effects of the drugs, chemotherapy, radiation, surgery and even death.  These contrary and parallel emotions seem to be linked in partnership throughout the childhood cancer experience.”

This month, Dr. Gregory Reaman was named by the Childhood Cancer Data Initiative (CCDI) as the new Scientific Director. In this role, Dr. Reaman will develop, direct, and coordinate CCDI programs and initiatives, as well as provide scientific oversight and recommendations to drive CCDI’s vision and progress.

Ursula Von Der Leyen, the European Commission President, established childhood cancer as a top priority when launching the European Beating Cancer Plan and the Cancer Mission. The overarching goal is to cure more patients, with few acute and long-term side-effects; address inequalities; and halve deaths by 2030.

Revised findings demonstrate favorable long-term safety and suggest tisagenlecleucel as a curative treatment option for heavily pretreated pediatric and young adult patients with R/R B-ALL.

Jazz Pharmaceuticals announced that the FDA approved a supplemental Biologics License Application (sBLA) to add a Monday/Wednesday/Friday (MWF) intramuscular (IM) dosing schedule for Rylaze^® for pediatric and adult ALL and LML.

Researchers have identified a novel treatment approach to an aggressive type of pediatric brain cancer, using therapies already approved to treat cancer. The team developed a mouse model of pediatric glioma with a histone mutation called H3.3-G34, which allowed them to study the tumor’s biology in the presence of a functional immune system, revealing a promising outlook for long-term survival.

Two new studies have uncovered a vulnerability in different forms of brain tumors that may make the cancers susceptible to the same treatments. The brain tumors are gliomas, which are among the most lethal cancers.

Upcoming Webinars, Online Opportunities, and Meetings:

With Grace Foundation hosts a wellness series for childhood cancer warriors and survivors to connect and strengthen your well being.  The next meeting is November 22, 7:00 pm ET.  Click here for more information.

Join the ACCELERATE group On February 9 & 10 for this hybrid meeting.  In person attendees will meet in a completely new venue in Brussels to discuss, network, share knowledge and engage with our international, multi-stakeholder community on the latest in paediatric oncology drug development.  Click here for more information.

My DIPGNavigator is hiring a Nurse Navigator (NN) who will provide one-on-one support (via virtual chats, phone calls, texts, email, etc.) to families navigating a DIPG/DMG diagnosis, with an emphasis on educating and connecting the family to appropriate medical experts. In addition to supporting the family through education and connection, the NN will direct the family to other resources the family may need during their DIPG/DMG journey (e.g., financial assistance, tumor donation resources, etc.).  Click for More Information

The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.