CAC2 Childhood Cancer Community News Digest (March 4-10)

Join the Congressional Town Hall on March 12, 2024 at 3 p.m. ET to learn more and ask questions about the “Data for Pediatric Brain Cancer Act of 2023,” a new bill in the U.S. House of Representatives that would establish a first-of-its-kind Pediatric Brain Tumor Real-World Data Registry Program. For information and to register.

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:

The National Council of Research Advocates met on March 5.  NCI Director Rathmell’s presentation as well as presentations on the Cancer Screening Network, Artificial Intelligence and Cancer Research, the President’s Cancer Panel on the National Cancer Plan, and the most recent Legislative update.  Access the slide decks and the entire broadcast here.

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.

Take Action:

The US House passed the Gabriella Miller Kids First Research Act 2.0, which will reauthorize federal funding for the National Institute of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program (Kids First).  The original law has supported lifesaving pediatric research of treatments and cures for childhood cancer over the past nine years.  Contact your Senator and ask for their support of Senate version of Gabriella Miller 2.0 (S. 1624). Click here to check if your Senator is already a cosponsor.  Find your Senators here.

The 2024 Conquer Cancer Patient Advocate Scholarship Program will provide a very limited number of scholarships for patient advocates to attend the ASCO Annual Meeting to learn of important advances in their areas of interest. The application deadline is Monday, March 18 at 5:00 PM (ET).

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.