About HNF
Patient-led since day one.
The Hereditary Neuropathy Foundation is a 501(c)(3) nonprofit founded in 2001 by Allison Moore, who lives with Charcot-Marie-Tooth disease. For 25 years we have raised awareness, supported people living with CMT and their families, and built the research infrastructure that treatments and cures depend on. This is who we are, who leads us, and how we are governed.
Who we are
HNF began with one person who refused to accept that nothing could be done. Allison Moore founded the Foundation in 2001 after her own diagnosis, and that founding fact still shapes everything: this is an organization led by and for the CMT community, not about it from a distance. We unite patients, clinicians, scientists, and industry around a single goal, moving the science forward without losing sight of the people waiting on it.
Mission
Hereditary Neuropathy Foundation leads the Charcot-Marie-Tooth cure effort, globally uniting patients, innovation, and technology to build the world’s largest CMT data infrastructure, accelerate breakthrough science through regulatory pathways, and deliver treatments that restore function, mobility, and quality of life.
By the numbers
As of July 2026.
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Get involved
The mission on these pages is powered by people living with CMT and the people who support them. The most direct way to move the science forward is to add your data to GRIN, HNF’s patient registry.