The Children's Tumor Foundation
01/29/2026 | Press release | Distributed by Public on 01/29/2026 10:30
Accelerating NF Research Through Data: Announcing the NF Data Utilization AwardsEmpty heading
Breakthroughs don't always start with a new experiment. Sometimes, they start by looking at existing data in a new way.
The Children's Tumor Foundation (CTF) is announcing the NF Data Utilization (NDU) Awardees. This request for applications (RFA), launched in 2025, builds on CTF's investment in the NF Data Portal to accelerate discovery by unlocking the power of shared research data for people living with NF, including all types of neurofibromatosis or schwannomatosis.
At the center of this effort is the NF Data Portal (hosted on Synapse by Sage Bionetworks), a platform initially funded by CTF in partnership with other NF foundations, bringing together curated NF research datasets contributed by scientists globally. Through the NDU Program, researchers analyze data already housed in the NF Data Portal to uncover new disease pathways, therapeutic targets, and biomarkers, then validate those findings through new experiments. Importantly, all newly generated data is returned to the NF Data Portal, strengthening this shared resource for the entire NF research community.
This approach turns the NF Data Portal into a discovery engine:
data reuse → new insights → validation → more shared data → faster progress toward treatments.
To support this work, CTF partners with Pluto Bio, a bioinformatics platform that allows researchers to explore and analyze NF Data Portal datasets, visualize results, and generate hypotheses efficiently. CTF provides full access to the platform for the duration of each award.
Each NDU Award provides up to $125,000 over two years, supporting discovery in Year 1 and experimental validation in Year 2.
Meet the NF Data Utilization Awardees
A man with short black hair, mustache, and glasses wearing a dark suit jacket and white shirt, posed against a dark studio background.Decoding Tumor-Associated and Intrinsic Drivers of Cognitive Impairment in NF1 through Integrative TranscriptomicsEmpty heading
Rajasekaran Mahalingam, PhD
The University of Texas MD Anderson Cancer Center
Cognitive challenges-such as difficulties with learning, memory, or attention-are common in people with neurofibromatosis type 1 (NF1), but their underlying causes remain unclear.
This project explores whether cognitive impairment in NF1 arises not only from changes in brain function caused directly by mutations in the NF1 gene, but also from signals released by tumors elsewhere in the body. In other diseases, it has been shown that tumors can release inflammatory molecules that travel through the bloodstream and affect brain function, but this possibility has not been systematically studied in NF1.
Dr. Mahalingam will analyze existing RNA sequencing data from NF1 tumors already available in the NF Data Portal, including cutaneous and plexiform neurofibromas, low-grade gliomas, and malignant peripheral nerve sheath tumors. He will look for genes and biological pathways linked to inflammation, oxidative stress, and neuronal function that may influence cognition. These findings will then be validated in mouse models of NF1 that exhibit cognitive challenges similar to those seen in patients.
By integrating tumor and brain data across human and animal studies, this research may identify new biological targets to improve cognitive outcomes for people living with NF1. All newly generated data will be shared back to the NF Data Portal for use by other researchers.
A man with short curly hair and a beard, wearing a light blue button-up shirt, smiles at the camera with a blurred indoor background.Integration of lipidomics and transcriptomics to evaluate targetable metabolic adaptations in NF1 tumorsEmpty heading
Kimani Njoya, PhD Student
Medical College of Wisconsin
People with NF1 can develop plexiform neurofibromas, benign tumors that sometimes progress into malignant peripheral nerve sheath tumors (MPNSTs), a rare and aggressive cancer. Today, clinicians have no reliable way to predict which tumors will become malignant or to detect dangerous changes early enough for effective treatment.
This project focuses on how NF1 tumors alter their metabolism as they progress, particularly how they use and store lipids (fats). Changes in lipid metabolism are recognized to support cancer growth and survival, and early studies suggest that malignant NF1 tumors have distinct lipid patterns.
Kimani will integrate gene expression data from NF1 tumors with detailed lipid profiling from patient samples. By linking changes in gene activity to metabolic changes in tumors, this research aims to identify lipid "fingerprints" that could signal tumor progression, uncover new therapeutic targets, and lay the groundwork for earlier detection and more personalized treatment strategies.
The long-term goal is to improve how NF1 tumors are predicted, monitored, and treated-bringing precision medicine approaches closer to reality for patients and families.
A man with short dark hair wearing a white dress shirt and a dark patterned tie, smiling at the camera in front of a gray background.Deciphering HMGA2-governed transcriptional networks in NF1- malignant peripheral nerve sheath tumor (MPNST) using integrated multi-omicsEmpty heading
Steven D. Rhodes, MD, PhD
Indiana University
While many NF1-associated nerve tumors remain benign, some progress into malignant peripheral nerve sheath tumors (MPNSTs), aggressive cancers with limited treatment options.
This project centers on HMGA2, a protein that increases as NF1 tumors become more aggressive. At the same time, natural regulatory molecules that normally help keep HMGA2 in check disappear during malignant transformation.
Rather than targeting HMGA2 directly-which is difficult to do with existing drugs-Dr. Rhodes will use datasets housed in the NF Data Portal to map the broader network of genes influenced by HMGA2 across different stages of tumor development. The research team will also explore whether restoring natural regulatory mechanisms can reprogram cancer cells, pushing them toward a less aggressive, more benign state.
If successful, this approach could support the development of more precise, less toxic treatment strategies for people living with MPNSTs.
Why This Matters
The NF Data Utilization Program reflects a deliberate shift in how NF research is advanced-one that elevates the NF Data Portal as a foundational CTF investment and prioritizes collaboration, data reuse, and shared progress.
By funding researchers to build on data already contributed to the NF Data Portal-and requiring that newly generated validation data be shared back-CTF is strengthening a research ecosystem designed to move discoveries forward faster, for everyone affected by NF.
Diagram of the NF Research Data Ecosystem showing funders, researchers, the NF Data Portal for data storage, and analysis tools like Cavatica, Pluto, BioPortal, and Terra.Empty heading
How the NF Data Ecosystem works:
CTF-funded researchers use shared datasets in the NF Data Portal-analyzed through powerful, cloud-based tools-to generate new hypotheses and validate discoveries. The data produced from these studies are returned to the Portal, strengthening a continuously growing resource that accelerates discovery and benefits the entire NF research community.
For more information about the NF Data Portal and NF Research Data requests, please contact Kara Quaid, PhD at [email protected].
Learn more about CTF funding opportunities here.
The Children's Tumor Foundation published this content on January 29, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on January 29, 2026 at 16:30 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]