The History of HNF
Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures.
HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) as a collaborative effort with academia, government, and industry to develop treatments for CMT. Currently TRIAD involves many groups that span the drug discovery, drug development, and diagnostics continuum.
HNF is actively committed to increasing awareness and accurate diagnosis of CMT and related inherited neuropathies. Major projects include the production of the documentary “Bernadette“, publication of a series of children’s books, Arlene On the Scene and Arlene the Rebel Queen, and quarterly CMT Update Newsletters.
HNF supports patients and families with critical information to improve quality of life and is dedicated to finding treatments for CMT. We provide a strong, organizational voice to those living with CMT all over the world.
Allison Moore founded the Hereditary Neuropathy Foundation upon learning of her sudden onset of CMT, which was brought on after she received a chemotherapy agent (Vincristine) which is toxic and contraindicated for people with CMT or for those with a family history of CMT. After this frightening and life-changing experience, Allison made a passionate commitment to changing the outlook for people living with CMT.
Since 2001, HNF has grown exponentially and spread its reach worldwide. In 2010, the Centers for Disease Control and Prevention (CDC) awarded a multi-year grant (UDD000713) to HNF to create a National CMT Resource Center. This cooperative agreement resulted in comprehensive resources, essential information, and educational materials targeted to patients, caregivers and medical professionals.
There has been incredible research progress since 2007 when HNF formed the Therapeutic Research In Accelerated Discovery (TRIAD) program. Allison leads the organization with one goal in mind: to support CMT patients and their families and to ensure that one day there are treatments and cures for CMT.