A Look Back: Celebrating the Community’s Impact in 2023
Looking back on 2023, we’re filled with gratitude for the Pediatric Brain Tumor Foundation community. Together, we confronted the alarming increase in diagnoses, mortality rates, and number of survivors facing current treatments’ long-term side effects. You answered the call to create a brighter future for children with brain tumors and their families.
Join us in reflecting on what your support made possible in 2023.
Donors’ Generosity Accelerates Treatment and Diagnostic Advances for Children with Brain Tumors
Donors’ support helped scientists unlock more answers and accelerate the discovery of safer ways to diagnose and treat pediatric brain tumors. These are just a few of the past year’s research highlights:
The FDA approved Tafinlar + Mekinist for children with low-grade gliomas with a BRAF V600E mutation – the first targeted therapy since chemotherapy to be approved as a first-line option for this tumor and mutation type. The Pediatric Brain Tumor Foundation’s funding of MEK-related studies contributed to the discovery of this and other MEK-targeting treatments.
Donor-supported research contributed to the discovery that the drug ONC201 significantly improves outcomes for children with diffuse midline gliomas – with an early phase trial showing it nearly doubled patients’ life expectancy compared to other treatment methods.
To improve understanding of how different treatments affect survivors’ cognitive, physical, social, and emotional well-being over time, the Pediatric Brain Tumor Foundation teamed up with the Christopher Brandle Joy of Life Foundation to fund a prospective international SIOPE/CONNECT phase-III study that will define the new “gold standard” of treatment for early childhood medulloblastoma.
When the Pediatric Brain Tumor Foundation’s initial funding to support liquid biopsy research at University of Michigan resulted in promising advances for quicker, more accurate diagnoses, we partnered with Catching Up With Jack to invest in an advanced centrifuge technology that will get this game-changing screening method out of the lab and into clinics faster.
When you donate to the Pediatric Brain Tumor Foundation this holiday season, your generous support of cutting-edge research, family support resources, and critical public policy will accelerate treatment breakthroughs and change kids' lives. Donate today to create a brighter tomorrow for children with brain tumors and their loved ones.
Community of Support Expands to Reach More Families Along Their Journey
Because of the compassion of the Pediatric Brain Tumor Foundation community, anyone affected by this disease – no matter where they live, who they are, or what type of tumor their child has – has a community of support to turn to year-round. In 2023, we saw this community grow, with more families reaching out to help others facing the same challenges they once endured. Here are a few ways community support grew this year:
2023 saw a significant increase in the number of parents and caregivers volunteering to offer one-on-one support to other families. Because of this, families at any stage of the brain tumor journey can now turn to peer-to-peer mentoring for help, including bereaved parents, with the number of bereaved mentors doubling year-over-year in 2023.
Feedback from the community identified a significant need among native Spanish-speaking parents and caregivers for easier-to-understand information in Spanish. In response, we expanded Spanish-language resources and outreach efforts in 2023, resulting in a 98% year-over-year increase in families accessing Spanish-language support.
Participation in online support groups expanded, with support groups for newly diagnosed, bereaved, and Spanish-speaking families now meeting monthly. With this year’s launch of Sibling Space, siblings of children with brain tumors also have a safe haven to connect with one another and express their feelings through art.
Tye was feeling withdrawn. It was therapeutic for him to be around other kids who struggled the same way he did and feel important. He's so used to feeling like ‘the other kid.’ This was really beautiful.
Patient Mom about the Sibling Space Art Support Group's Impact
As we look ahead to 2024 and beyond, the newly launched curethekids.org will help continue to grow the Pediatric Brain Tumor Foundation community, offering comprehensive resources and stories of hope that empower families with information and help them find ways to connect with each other, as well as ways to get involved.
Growing Advocacy Community Drives Policy Change
This year, a growing number of survivors, families, and advocates spoke up about the need to make kids with brain cancer a priority – and policymakers at both the state and federal levels were listening.
In addition to increased participation in the Alliance for Childhood Cancer’s 2023 Action Days, the PBTF State Cancer Plan initiative continued to make progress in several states and the relationships our advocates built and strengthened at the federal level have set the stage for important legislation in 2024.
During Childhood Cancer Awareness Month, 12-year-old brain tumor survivor Charlie testified in front of the U.S. Senate Finance Committee and urged committee members to support the Accelerating Kids’ Access to Care Act. This bipartisan bill aims to eliminate potential delays in treatment for critically ill children who are on Medicaid and need to cross state lines for treatment. After Charlie’s family reached out about his wish to testify to Congress, the Pediatric Brain Tumor Foundation worked with Senators Debbie Stabenow and Chuck Grassley to make it happen.
In November, U.S. Representatives Ami Bera, M.D. and Mike Kelly introduced the Data for Pediatric Brain Cancer Act of 2023, which aims to establish a first-of-its-kind Pediatric Brain Tumor Real-World Data Registry Program and strengthen crucial data collection efforts to support pediatric brain cancer research. The Pediatric Brain Tumor Foundation was an early endorser of the act and is organizing advocacy effort to educate other members of Congress about its benefits in the new year. Sign up for advocacy alerts to stay up-to-date about this and other legislation opportunities.
Looking back on 2023, we are grateful and inspired by this incredible community. We know there is still so much work to be done to rid the world of pediatric brain tumors and that the determination and compassion of this community is what will do it.
Thank you to everyone who has supported the Pediatric Brain Tumor Foundation’s mission this year, and we look forward to the continued impact we will all have in 2024.
Pediatric Cancer Neuropsychological Needs Assessment Act Introduced in New York Legislature
A new bill introduced in the New York State Legislature by Senator Shelley B. Mayer and Assembly Member Christopher Burdick will help remove some of the barriers standing between children with cancer and the learning accommodations they need to succeed in school. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers to provide coverage for neuropsychological assessments for children diagnosed with cancer that affects brain development or function.
The Pediatric Brain Tumor Foundation Welcomes Dr. Sanjay Gupta to Its Board of Directors
The Pediatric Brain Tumor Foundation (PBTF) is proud to welcome Dr. Sanjay Gupta, CNN’s chief medical correspondent, to the PBTF’s Board of Directors. Dr. Gupta will bring his wide-ranging experiences in medical practice and journalism, including as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, associate professor of neurosurgery at the Emory University School of Medicine, and chief medical correspondent for CNN, to bear as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.
