CAC2 Childhood Cancer Community News Digest (April 8-14)

Assorted News from the Last Week:

The UK’s National Institute for Health and Care Excellence (NICE) recommended Novartis’ autologous CAR T-cell therapy Kymriah (tisagenlecleucel) for children and young adults with previously treated B-cell acute lymphoblastic leukemia (ALL).

CAC2 Supporting Member Oncoheroes Biosciences has been chosen as one of the eleven finalists for the inaugural J.P. Morgan Asset Management: Life Sciences Innovation Summit. Scheduled for May 14th–15th, 2024, at the Cleveland Clinic Abu Dhabi, this event aims to cultivate a thriving ecosystem for early-stage entrepreneurs in the life sciences sector.

Researchers have identified new variations in neuroblastoma that could lead to a more accurate prognosis and better-targeted treatments for this devastating childhood cancer. A study reveals three new subgroups of the most common type of neuroblastoma, each with different genetic traits, expected outcomes, and distinguishing features that offer clues as to which treatments may be most effective.

PanCareSurPass is a novel European collaboration that will improve person-centred Survivorship Care for CCS across Europe through a robust assessment of the implementation of SurPass v2.0 in different healthcare settings.

A small clinical trial intended to take the guesswork out of care for pediatric patients in exactly this predicament tested an idea called functional precision medicine, in which researchers harvest cells from the patient’s tumor, take them to a lab, and subject them to brute force testing against every potential drug. (gated)

1,000 paper cranes can bring patients one step closer to healing, reminding us all to hold on to hope (gated)

Upcoming Webinars, Online Opportunities, and Meetings:

Training Capsule:  MDR and drugs in pediatrics: How to navigate within the regulatory ocean?’ Xavier Luria, an expert in Medical Devices and Drug regulation, will shed light on how to navigate the regulatory scheme and landscape existing in Europe. April 17th from 7:00 to 7:45 am ET.  For information and to register.

Healing Hearts was created by grieving parents who needed a haven of love and comfort along with the hope of healing. Together, we support each other in creating a life worth living, for and with our children. Healing Hearts is for Osteosarcoma Bereaved families only and meets once a month on Wednesdays from 7- 8PM ET on April 24.  For information and to register.

Join BJ Miller, Mettle Health founder, palliative care and hospice physician and author, and Allison J. Applebaum, clinical psychologist and author for an interactive discussion on all things caregiving on April 26 from 1:00 to 9:00 ET.  For information and to register.

Join MIB Agents in Making It Better through TURBO, the Tumor Review Board for Osteosarcoma on May 8 from 5:00-6:00 pm ET. This virtual opportunity is designed to foster collaboration and knowledge-sharing among multidisciplinary experts globally. For information and to register.

The 21st International Symposium on Pediatric Neuro-Oncology (ISPNO 2024) from June 29 – July 2, 2024, and the Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) from June 28-29, 2024, which will take place in Philadelphia, PA.  For information and to register.

56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024. Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.

Past Recordings:

The Neuro-Inclusive Oncology Care and Empowerment program was developed to help Dana-Farber’s physicians and other providers treat cancer in people who have intellectual and/or developmental disabilities.  Access the podcast about this program.

Interview with Dr. Alanna Church, Molecular and Pediatric Pathologist at Boston Children’s Hospital, talks to NewsMedical about their work in pediatric oncology, and the need to expand research and clinical options for children with cancer.

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):

Take Action:

You are invited to enroll in a federally-funded study evaluating different types of support for bereaved parents that is currently seeking participants. Parents may be eligible if they lost a child diagnosed with cancer, are at least 6 months out from their loss, and live in one of the following states: NY, NJ, PA, CT, FL, or TN (other eligible states are being added, please complete the survey to check with us). To find out if you may be eligible, please click here:, visit our website at, or email us at . This study is recruiting at Memorial Sloan Kettering Cancer Center, St. Jude Children’s Research Hospital, Children’s Hospital of Philadelphia, and Sylvester Comprehensive Cancer Center but is open to parents in the community, regardless of where one’s child was treated.

You are invited to participate in a study titled “Power of Human Connections” to improve mental health support using a peer-to-peer support mobile application for patient caregivers of young children with cancer. If you are the primary caregiver for a child between 0 to 14 years of age currently undergoing treatment for cancer; have access to a smartphone capable of running iOS or Android software; are comfortable using applications, technology, and digital devices, and are willing to answer the study questionnaires, have friends and family who are comfortable using applications, technology, and digital devices, and are willing to interact with technology on a smartphone, have the ability to read and understand English fluently, and have the ability to read and consent to the study and study procedures please access the informed consent and link to get started HERE.

The 2024 Evan Lindberg & Erik Ludwinski College Scholarship Program is open to high school seniors who are survivors of a high-risk cancer or in treatment for a high-risk malignancy.  Students must be accepted into a 4-year undergraduate institution and demonstrate a need for financial assistance.  For information and to apply.

The Facebook group ArtVsCancer has hundreds of artists, who create free custom art for children with a life-threatening illness. We have helped many individual patients and are collaborating with Kristen King, the Manager of Child Life at Memorial Health Dwaine & Cynthia Willett Children’s Hospital of Savannah.  For information and to learn more check out the link to some of the children and their custom art


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