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The Christopher Brandle Joy of Life Foundation is teaming up with the Pediatric Brain Tumor Foundation to fund a prospective international SIOPE/CONNECT phase-III study that aims to define the new “gold standard” of treatment for early childhood medulloblastoma and improve survivors’ cognitive outcomes.
As survival rates for medulloblastoma and other types of pediatric brain tumors rise, it’s critical that researchers, patient advocacy organizations, and families understand how different treatments will affect survivors’ cognitive, physical, social, and emotional well-being over time. Studying a treatment’s long-term impact can help determine its true effectiveness and ultimately lead to improved quality of life for survivors and their families.
The European Society for Paediatric Oncology (SIOPE) and the CONNECT Consortium’s phase-III study will compare neurocognitive outcomes for two highly effective medulloblastoma treatment regimens, studying the treatments’ impact on young children at diagnosis and again at 2.5 years after diagnosis.
Led by Dr. Maryam Fouladi, CONNECT Chair, Nationwide Children’s Hospital, Dr. Girish Dhall, Study Co-Chair, University of Alabama at Birmingham, and Dr. Steven Sands, Lead Psychologist, Memorial Sloan Kettering, the study’s researchers will also collect and analyze information about the occurrence of secondary cancers, neurological and endocrine issues, hearing loss, and psychosocial comorbidities which often occur in medulloblastoma survivors and may differ after both regimens. These late effects can severely limit survivors’ participation in everyday life, affecting both the survivor as well as their parents, caregivers, and siblings.
Because treatment approaches and care standards for pediatric brain tumors haven’t changed significantly in the past 40 years, survivors face a lifelong series of challenges that affect their learning, cognition, and quality of life. So, when a new treatment shows promise, it’s essential we identify any unintended side effects so we can find ways to reduce and ultimately eliminate their impact on survivors’ and families’ lives.Dr. Ryne DeBo, Vice President of Research at the Pediatric Brain Tumor Foundation
The Pediatric Brain Tumor Foundation’s multi-year grant, to be co-funded by the Christopher Brandle Joy of Life Foundation, will fund the screening of 75 patients to ensure they qualify for the trial, as well as test reviews, clinical coordination, support for enrolling sites, and operations support.
“We are so excited to partner with the Pediatric Brain Tumor Foundation once again on this unprecedented project focused on looking at options for medulloblastoma patients with the hope of reducing the devasting long-term effects of treatment,” says Brian and Mary Brandle, Christopher Brandle Joy of Life co-founders and parents of Christopher, whose indomitable spirit lives on through the foundation’s work.
With the support of donors and partners like the Christopher Brandle Joy of Life Foundation, the Pediatric Brain Tumor Foundation is changing the treatment landscape for children and teens with brain tumors. The largest patient advocacy funder of pediatric brain tumor research, our seed funding brings scientists’ novel concepts from idea to lab to clinic faster – leading to longer, healthier lives. Visit curethekids.org to learn how you can join us in ending childhood brain cancer.
About the Pediatric Brain Tumor Foundation
Since 1991, the Pediatric Brain Tumor Foundation has led the way in funding research into pediatric brain tumors, supporting families affected by this disease, and advocating for policies that help patients, survivors, and their loved ones. Dedicated wholly to addressing this rare disease and guided by the experiences of patients, survivors, their parents, and siblings, the Pediatric Brain Tumor Foundation is the only organization to meet families’ needs along every step of their cancer journey.
The largest patient advocacy funder of pediatric brain tumor research, the foundation also funds and advocates for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. Learn more at www.curethekids.org.
In 2023, the Pediatric Brain Tumor Foundation community answered the call to create a brighter future for children with brain tumors and their families. Read about what your support made possible in research, family support and advocacy.