CAC2 Childhood Cancer Community News Digest (May 20-26)

May 27, 2024 Community News, News Digest

Assorted News from the Last Week:

The FDA Pediatric ODAC met to “discuss perspectives on the impact of FDARA on the field of pediatric oncology, considerations related to implementation of FDARA for new molecularly targeted drugs and biological products, and the role of proof-of-concept studies using relevant pediatric preclinical models.” There was also a discussion of the role of international collaboration and how coordinated approaches to the design and conduct of molecularly targeted pediatric cancer investigations can be best achieved in light of RACE Act regulations. Click here to view all the meeting information and links to key documents and presentations.  Full video below in Past Recording section.

Pediatric ODAC Summary

The observed increase in colorectal cancer cases in younger age groups extends to preteens.  Experts not that  while cases remain rare in younger people, they’re much more common than 25 years ago.

The Energy and Commerce Committee advanced proposals earlier this month that will extend Americans’ access to telehealth services, strengthen and preserve Medicaid, and encourage innovation to help children with rare diseases. Several of them are important to the childhood cancer community.

A group of researchers at UQ’s Australian Institute for Bioengineering and Nanotechnology (AIBN) have developed a fluoropolymer-engineered iron oxide nanoparticle and think it could be the ideal vehicle to simultaneously treat, map and monitor the notoriously challenging to reach children’s brain cancer medulloblastoma.

Most childhood cancer survivors are not up to date on guideline-recommended screening for late effects of cancer treatment or second malignancies, according to study results.

A study of dance/movement therapy for pediatric oncology patients and their caregivers suggests that it encourage self-expression and meaning-making, helps teach emotional self-regulation, enhanced coping strategies, and that engagi in creative dance-play promoted socialization and caregiver-child interaction.

Upcoming Webinars, Online Opportunities, and Meetings:

The countdown to the “Big Data Dialogue, The Next Catalyst for Cures” has begun. Join Kids First on May 29 at 11 a.m. EDT for a deep dive into pediatric research advancement through big data. For information and to register.

Join Rebecca Katz, culinary innovator, and Natalie Crittendon, Occupational Therapist, for a discussion on all things nutrition as relates to illness on May 31, from 1:00-2:00 ET.  For information and to register.

Register for the Making It Better at the 7th Annual FACTOR Conference in June 20-22, 2024—an intimate gathering shaping the future of osteosarcoma care. Connect with more than 60 dedicated doctors and researchers, resilient patients and families, and insightful scientific panels in thoughtful discussions, shared experiences, with a touch of fun.  For information and to register.

Join Camp Erin for a two-day photography virtual event to explore the use of photography as a unique form of grief expression. Attendees will learn basic photography skills and incorporate the use of imagery in expressing thoughts and feelings difficult to share in words. This online event will serve teens and young adults grieving the death of a significant person in their lives.  Evenings on June 22 and June 29. For information and to register.

Triage Cancer is presenting a webinar for caregivers on June 27, 2024 at 1:00 ET.  Learn about the rights of caregivers at work, how to replace lost wages while acting as a caregiver, and practical tips to support caregivers. We’ll also talk about community resources available to caregivers. 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

Watch: FDA Pediatric ODAC discussion of RACE Act

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):

  • Individual Member and CAC2 Board Member Susannah Koontz talks about her past work as a Clinical Pharmacy Specialist at MD Anderson, and her work with different interest groups to help pediatric cancer patients.

Take Action:

Try out the monthly donation platform dedicated to childhood cancer that helps nonprofits and warrior-parents team up to raise money for research, family support, and advocacy offered at no charge by Hello Cure. 

The Children’s Cancer Cause announced that the organization is accepting applications for its 2024 Survivorship Champion’s Prize. This $10,000 annual award is presented to a group, program or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers.

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.

CAC2 Member Cancer Help Desk provides expert cancer navigation to anyone from anywhere.

Announcing a new Childhood Cancer Data Initiative (CCDI)–related Request for Proposals (RFP). The RFP invites proposals from organizations able to perform molecular profiling using specimens from children, adolescents, and young adults with cancer. Submissions will be accepted until 3:00 p.m. ET on June 14, 2024.

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