CAC2 Childhood Cancer Community News Digest (February 26-March 3)

Join MIB Agents on March 13, 2024 for The Tumor Review Board for Osteosarcoma’s ‘Making It Better through TURBO‘ – The Tumor Review Board for Osteosarcoma. This virtual opportunity is designed to foster collaboration and knowledge-sharing among multidisciplinary experts globally.  For information and to register.

Mettle Health hosts “The Patient Perspective” on March 15 at 1:00 ET. BJ Miller and Karen Hewitt will have an intimate discussion that explores themes of living with a serious illness.   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 the following dates:  March 27 and April 24.  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.

56^th 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.

Recent Recordings:

Gift from a Child debuted its video toolkit for patient care teams.  Follow the link to this video library that support post-mortem tissue donation in a professional and supportive way.

• The Ask – How to discuss the option for post-mortem donation with families
• The Journey of Tissue – follows tissue as it is donated, studied and the impact on research. This video is also helpful for families to understand the importance of donating.
• GFAC Tissue Navigators – Interviews with two navigators explaining how they support caregivers and families
• Why Donate Tissue – Covers the importance of donation from medical, scientific and family perspective
• What Donation Has Meant to Our Family – GFAC founding families share stories on what donating has meant to them.

In this recording, the pLGG EL-PFDD Meeting, hosted by the Pediatric Brain Tumor Foundation on February 23rd, provided a unique opportunity for pediatric low-grade glioma patients, survivors, their families, and caregivers to speak directly to the U.S. Food and Drug Administration (FDA), pharmaceutical companies, and the public about their current and past experiences with pLGG and the impact the disease has had on their daily lives.

Take Action:

Join our friends from around the world in a follow up call to action to International Childhood Cancer Day that we celebrated on February 15.  Participate by sharing the challenges you have experienced, or experience, with childhood cancer care. Your input will populate to this global map of patient experiences. To add your input to the map and join the campaign, visit www.iccd.care, click on ‘participate.’

Visit LFSawareness.com to learn more about Li-Fraumeni syndrome, spread the word, and support families living with LFS.  The Li-Fraumeni Syndrome (LFS) is a hereditary cancer predisposition syndrome that we see in some pediatric cancer patients. During Li-Fraumeni Syndrome Awareness Month, the LFS community spreads the word about this syndrome, including pointing out such facts as:

• 50% of LFS cancers develop before the age of 30.
• Most cancers seen in LFS are considered rare.
• ALL childhood cancers ARE rare.