Stay up-to-date about what's happening in childhood brain cancer research, advocacy, and family support, as well as organization news and partner spotlights from across the Pediatric Brain Tumor Foundation community.
Accelerating Kids' Access to Care Act: Improving Healthcare for Children Across State Lines
The Accelerating Kids’ Access to Care Act, passed the U.S. House of Representatives on September 17 to improve children’s access to essential health care, while eliminating administrative burdens for providers and states.
Groundbreaking Voice of the Patient Report for pediatric low-grade glioma (pLGG) published by Pediatric Brain Tumor Foundation
“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
Ursula Burns, Former Xerox CEO, and Jordan Wertlieb, EVP and COO of Hearst, Appointed to Pediatric Brain Tumor Foundation’s Advisory Board as Inaugural Members
The Pediatric Brain Tumor Foundation today announced the appointment of Ursula Burns and Jordan Wertlieb as inaugural members of the organization’s new Advisory Board. Burns and Wertlieb offer their exceptional business acumen and experience to PBTF, the largest patient advocacy funder of pediatric brain tumor research.
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.
Cancer Gets Lost’s Online Charity Auction of Rare and Signed LOST Memorabilia to Benefit Pediatric Brain Tumor Foundation
Cancer Gets Lost (CGL) has selected the Pediatric Brain Tumor Foundation as the benefiting charity for their 2024 LOST charity auction taking place online May 11-18 in recognition of Brain Tumor Awareness Month. This year’s Cancer Gets Lost auction will celebrate the show’s 20th anniversary by auctioning rare and signed LOST memorabilia kindly donated by fans, cast, crew, and creatives, as well as rare collectibles from Bad Robot and other projects LOST cast members have worked on.
Pediatric Brain Tumor Foundation Celebrates FDA Approval of Day One Biopharmaceuticals’ OJEMDA™, New Treatment for Common Pediatric Brain Tumor Type
The Pediatric Brain Tumor Foundation is pleased to celebrate the FDA’s approval of Day One Biopharmaceuticals’ OJEMDA (tovorafenib), a new therapy for the treatment of pediatric low-grade glioma (pLGG), the most common brain tumor diagnosed in children. The FDA’s approval of OJEMDA represents a significant milestone for pLGG patients and their families. The new treatment also stands as a key breakthrough in the Pediatric Brain Tumor Foundation’s efforts to accelerate new treatment options for all children with brain tumors.
Pediatric Brain Tumor Foundation Awards More Than $1 Million in New Research Funding to Dana-Farber Cancer Institute
The Pediatric Brain Tumor Foundation (PBTF) proudly announces an infusion of $1 million to help researchers, led by Dana-Farber Cancer Institute’s Drs. Pratiti (Mimi) Bandopadhayay and Rameen Beroukhim, launch a study into a novel therapeutic target and expand their research into overcoming treatment resistance and rebound growth.
Urgent Action Needed: Congressional Hearing on Accelerating Kids’ Access to Care Act
Recently, the Accelerating Kids' Access to Care Act gained significant momentum in Congress when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child. Now, to see it become law requires your immediate action.