About HNF

Twenty-five years building the path to a cure

The Hereditary Neuropathy Foundation was founded in January 2001 by Allison Moore, who lives with Charcot-Marie-Tooth disease. It has carried the same name, and the same purpose, ever since: to give people living with CMT a strong, organizational voice, and to build what the science needs to reach treatments and cures.

How HNF began

Allison Moore founded the Hereditary Neuropathy Foundation after a sudden onset of CMT that followed a chemotherapy agent (Vincristine) which is toxic, and contraindicated, for people with CMT or a family history of it. After that frightening, life-changing experience, she made a passionate commitment to changing the outlook for people living with the disease.

She put her energy into the condition that had no cure and far too little attention. In the years since, HNF has not waited for the field to catch up. It has repeatedly built the infrastructure CMT research needed, often before anyone else did.

That resolve became a way of working. Allison built HNF as a patient-led organization, one that starts from lived experience rather than treating it as an afterthought, and she has kept the patient voice at the center of its research, its partnerships, and its programs. More than two decades on, she still leads that mission, driven by a simple conviction: no one facing CMT should be met with the silence and uncertainty she once was.

What HNF does

HNF is a 501(c)(3) nonprofit. Our work follows three lines, each reinforcing the others: raise awareness and accurate diagnosis, support patients and families, and fund the research that leads to treatments and cures.

A pattern of building what the field needed

HNF has a long record of creating the tools CMT research did not have. A few of the firsts:

1. 1 The first official CMT patient registry GRIN, the Global Registry for Inherited Neuropathies, launched in 2013. It is the only IRB-approved, patient-led global registry for inherited neuropathies, pairing patient-reported data with medical records and genetic results.
2. 2 First patient organization to engage the FDA HNF convened an externally-led Patient-Focused Drug Development meeting, bringing the patient voice into how CMT therapies are evaluated.
3. 3 First advocacy group to fund HDAC6-inhibitor research for CMT2A Seed funding moved the work forward through successive disease models, from zebrafish to mouse to rat.
4. 4 The first patient-run CMT biobank Built to scale and to connect biospecimens to real-world natural history data.
5. 5 First advocacy-led decentralized natural history study Using digital and wearable technology to enroll patients in days rather than months (2024).
6. 6 First to define a CMT Center of Excellence Setting the standard for what specialized CMT care looks like, and growing a network of centers around it.

What makes HNF different

HNF are pioneers in patient-focused research, using innovation to create real impact, and they bring the patient voice into everything they build. Rather than only funding others' work, HNF runs its own therapeutic pipeline for several CMT subtypes (including CMT4A, CMT2A, and CMT1A), its own shots on goal toward treatments and a cure.

Want to see how the science fits together? Explore the TRIAD model or read about our work with the FDA →