How it started
Allison Moore is the founder and CEO of the Hereditary Neuropathy Foundation, and she lives with CMT type 1A. HNF exists because of a turning point in her own care. In a hospital, she was given medications that made her CMT worse and left her legs weak and unsteady.
Rather than accept that, she built something. In 2001 she founded HNF, with a mission to drive the treatments and the cure that did not yet exist, and to make sure the next person with CMT would not be met with the same lack of understanding she was.
Making CMT a household name
From the start, Allison's goal has been twofold: fund the research that leads to real treatments, and raise awareness so the world recognizes CMT. Under her leadership, HNF built the GRIN patient registry, brought the first Patient-Focused Drug Development meeting for CMT to the FDA, and created the TRIAD model that connects patients, researchers, and industry.
She has carried that message to national stages, from rare-disease advocacy symposiums to research and industry panels, and has been recognized for her community impact on research. Her ask of the community is simple.
Each of us needs to tell our story. CMT deserves attention now.
Allison Moore
Leading from the front
Allison does not just run the foundation, she lives the mission. She stays active on her own terms, from spin classes to riding with Team CMT, and she shows up for the community she built, year after year, at HNF Summits and events.
Hope, first
Ask her what she wants people to take away, and the answer is always the same.
My goal for every patient is to walk away with hope. Hope for treatments. Hope that a safe place to voice their concerns exists. Hope that HNF is here to help CMT patients and their families, and is their voice and advocate for a better future.
Allison Moore
