CAC2 Childhood Cancer Community News Digest (June 10-16)

Assorted News from the Last Week:

Bristol Myers Squibb’s Augtyro (repotrectinib) has secured an accelerated approval from the FDA for the treatment of adult and paediatric patients aged 12 years and older with solid tumours harbouring NTRK gene fusions.

Researchers found that DIPG tumors’ metabolism differs from adult brain tumors, a key to understanding treatment resistance in this aggressive form of pediatric brain cancer.

A discussion of the question: “Is it appropriate to enroll children and adolescents in end-of-life clinical studies?”

A virtual peer support program created at the Hospital for Sick Children (SickKids) has shown significant potential in helping immunocompromised teenagers cope with the challenges of social isolation and physical distancing, positively impacting their well-being.

Neuroblastoma predisposition and surveillance—an update from the 2023 AACR Childhood Cancer Predisposition Workshop.

Kids First DRC launches enhanced data portal to strengthen collaborative pediatric research.

The MEK inhibitor trametinib (Mekinist) was an effective treatment for pediatric patients with relapsed or refractory juvenile myelomonocytic leukemia (JMML) enrolled in a phase II clinical trial, with seven of 10 patients alive after a median of two years, according to results published in Cancer Discovery.

Patients with Down syndrome (DS) B-precursor acute lymphoblastic leukemia (B-ALL) had higher rates of undetectable minimal residual disease (MRD) following consolidation treatment with blinatumomab (Blincyto) vs chemotherapy, according to findings from the ALLTogether1 DS study.

Upcoming Webinars, Online Opportunities, and Meetings:

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.  Two evenings:  June 22 and June 29. For information and to register.

Lori Krause will lead Healing Hearts Wellness Workshops Wednesday from 7- 8PM ET  June 26. Participants will learn techniques to better manage stress and moods and learn new practices to stay healthy, embrace new experiences and thrive while living with loss and grief. 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: Father’s Day Grief, When You’re Grieving a Child with David Kessler.

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):

  • CAC2 Member Ashley Guthrie (Austin Hatcher Foundation for Pediatric Cancer)

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. 

CAC2 Member 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.

CAC2 Student Member Na Ouyang, MSN, RN (PhD candidate, Yale School of Nursing) is conducting her dissertation study, which focuses on exploring how clinician-parent communication influences parents’ preparation for their child’s end-of-life and then impacts parental grief in early bereavement. Click here for information and details.  Click here for the IRB Approval document.


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