Investing in Research.
Driving progress.
CureNFwithJack strategically invests in research that we believe can meaningfully advance the NF field and improve patients’ lives.
Our current portfolio reflects our three research priorities: addressing the root cause of NF1; reducing or eliminating tumors, especially brain tumors; and improving quality of life.
Some projects span more than one priority, and some have the potential to benefit people far beyond the NF community.
Below are several of the research efforts we are currently supporting, followed by earlier CureNFwithJack investments that helped advance important NF science and care.
From Discovery to Treatment: CureAge Therapeutics
CNFWJ’s First Biotech Investment
ROOT CAUSE + TUMORS
In 2026, CureNFwithJack made its first biotechnology and venture-philanthropy investment in CureAge Therapeutics, a company developing a genetic-medicine platform for NF1.
This investment represents an expansion of the ways CNFWJ can help accelerate promising science — complementing our traditional academic research funding with strategic investment in biotechnology working to move potential therapies toward patients.
Finding a New Treatment Approach for Pediatric Low-Grade Brainstem Gliomas
David H. Gutmann, MD, PhD
Washington University School of Medicine
TUMORS — ESPECIALLY BRAIN TUMORS
CureNFwithJack is funding Dr. David Gutmann’s team as it uses laboratory models of pediatric low-grade brainstem gliomas to test existing drugs in new ways and search for a safer, more effective treatment approach for all children affected by these tumors, including children with NF1.
Pediatric low-grade brainstem gliomas may be called “low-grade,” but their impact can be anything but. The brainstem is one of the body’s most vital control centers, helping regulate movement, speech, swallowing and other essential functions. Because of where these tumors grow, surgery is not a safe option. This work is especially personal to CureNFwithJack.
A Blood Test to Find Dangerous Tumors Earlier
A Multidisciplinary MPNST Biomarker Collaboration
TUMORS — EARLY DETECTION
CureNFwithJack is funding the next phase of a multidisciplinary project developing a simple blood test to help detect and monitor malignant peripheral nerve sheath tumors, or MPNSTs.
The test looks for tiny fragments of tumor DNA circulating in the bloodstream. The current phase includes serial blood testing of higher-risk individuals, expansion of a national biobank, laboratory analysis and work designed to move this promising technology closer to clinical use.
MPNST is a particularly dangerous cancer for the NF1 community, but it also occurs in people without NF1 — giving this work potential impact beyond NF.
Helping Cells Read Through a Genetic “Stop Sign”
Bedwell Research Lab, University of Alabama at Birmingham
Robert Kesterson, PhD
Pennington Biomedical Research Center
ROOT CAUSE
Some people with NF1 have a type of genetic change called a nonsense mutation that acts like an incorrect STOP sign, preventing the body from making complete neurofibromin.
CureNFwithJack is funding the Bedwell Research Lab’s work testing drug compounds designed to help cells get past that premature stop signal and restore production of functional neurofibromin. Dr. Robert Kesterson at Pennington Biomedical is developing the NF1 mouse model used to help test this therapeutic approach.
Building the Science Behind Tomorrow’s NF1 Treatments
James A. Walker, PhD
Massachusetts General Hospital/Harvard Medical School
ROOT CAUSE + QUALITY OF LIFE
CureNFwithJack has invested in a postdoctoral research fellowship and laboratory research costs at the Walker Lab, supporting work aimed at better understanding NF1 and identifying new therapeutic approaches.
The laboratory’s research spans fundamental questions about the underlying biology of NF1 as well as neurological and other challenges affecting quality of life.