CAC2 Childhood Cancer Community News Digest (April 15-21)

Assorted News from the Last Week:

To achieve successful socioeconomic reintegration in the long term, it is crucial to implement a childhood cancer survivorship program that addresses the unique needs of individuals based on their disease and cultural background throughout their entire lives.

Data sharing platforms for precision care can revolutionize the way we treat patients and advance treatments and cures for pediatric brain cancer.

Following a progressive expansion, the ZERO Childhood Cancer program is now available to all children with cancer in Australia. This means that every child, regardless of their cancer type or risk profile, will now have access to precision medicine through this world-leading Program.

Researchers developed a framework to identify which children should be included in End-of-Life quality measures for children with cancer.

NIH researchers develop AI tool with potential to more precisely match cancer drugs to patients.  This is a proof-of-concept study published today in the journal Nature Cancer that we hope will eventually be expanded to include children.

This new study revealed how aberrant epigenetic regulation contributes to the development of atypical teratoid/rhabdoid (AT/RT) tumors, which are aggressive brain tumors that mainly affect young children.

A recent pilot study investigated the potential of social robotics as an adjuvant therapy during hospitalization for pediatric patients with cancer to stimulate curiosity and, in hospitalized children, patient participation with their care and rehabilitation.

Upcoming Webinars, Online Opportunities, and Meetings:

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:

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:

CAC2 is a member of Childhood Cancer International (CCI). They have begun a global awareness campaign to create a childhood cancer alphabet.  To join this campaign click this link and share with words that reflect your experience with childhood cancer in your own language, beginning with each letter of the alphabet. Together, in collaboration, we are strengthening our childhood cancer village. Your voice and that of your community are important!

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: https://redcap.link/parentsstudy, visit our website at bereavedparentsupportstudy.com, 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 https://www.facebook.com/groups/artvscancer/announcements.

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