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.

Recordings of Recent Past Events:

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) hosted a virtual workshop on November 18.  The topic was Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults.   Slides Here. Video available soon.

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) hosted a virtual workshop on November 2 that brought together a variety of stakeholders and leaders with a breadth of scientific and technical expertise to gain common understanding of the current issues and opportunities related to electronic health record (EHR) extraction in childhood cancer research.  Watch here.

The ACCELERATE Fit for Filing Working Group developed an education programme in 2022 to disseminate the guidelines and support investigators and academic sponsors and industry collaborators to understand the needs for “fit for filing“ trials.  Two of the three webinars are available for viewing (click webinar titles below to view):

Take Action:

The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer Survivorship Toolkit to provide info & resources to help survivors/families.  If you have explored resources for your family, or to assist others, THEY NEED YOUR HELP!  Please add your resources using the appropriate form below:

●      Educational Guidance and Planning https://www.surveymonkey.com/r/GF9NX6M
●      Insurance and Financial Health https://www.surveymonkey.com/r/F96L5CJ
●      Managing Physical Health and Late Effects https://www.surveymonkey.com/r/FN2J8WZ
●      Psychosocial/Emotional Health/Wellbeing https://www.surveymonkey.com/r/FNDGC9K
●      Transitioning to Adulthood https://www.surveymonkey.com/r/F9MBQWZ
●      Wellness/Healthy Behaviors https://www.surveymonkey.com/r/FNVPH8Z

 

The NCI-Cancer Research UK Cancer Grand Challenges initiative brings together international research teams to tackle cancer’s toughest challenges. The first round of challenges funded through this partnership were announced in June 2022, with four teams receiving awards totaling $100 million over 5 years. NCI and Cancer Research UK are now preparing for the next round of challenge opportunities, and we need your ideas – submit them online now through November 28, 2022. For those looking for input on what to submit, the web portal provides additional guidance for developing suitable ideas for consideration.

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.

Help make DIPG and childhood cancer history with floor-vote scheduled for H. Res. 404, the DIPG Awareness Resolution!
Here’s all the info on it: https://dipgadvocacy.org/help-us-make-childhood-cancer…/  Quick link to the sign-on form:

 

Applications are now open for the brand new ALADDIN educational programme! Are you a patient advocate interested in paediatric drug development? Apply today and train in regulatory science for childhood cancer drug development:https://aladdin-education.eu/training-course/

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