History of HNF
The Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which raises awareness, funds scientific research, and educates the medical community as well as the general public about Charcot-Marie-Tooth disease (CMT). HNF is committed to providing support to people living with CMT and their families. Through its comprehensive social networks within Facebook, Twitter and Inspire, the sponsorship of critical awareness projects such as the production of the documentary Bernadette’s Song and the children’s book Arlene On the Scene, and the distribution of the Essential Guides, HNF offers the information, resources, and connections people need to live strong with CMT.
HNF also promotes and supports both clinical and primary CMT research. Our innovative research program, Therapeutic Research in Accelerated Discovery (TRIAD), is designed to encourage cutting-edge research at a progressive pace while addressing the specific needs of people with CMT. The TRIAD program promotes accelerated discovery by establishing a collaborative research process that has defined goals for each funded lab and requires the sharing of discovery at each stage of research. We believe that this multi-tiered approach will help people with CMT live a better life while we develop effective therapies, treatments, and a cure for CMT.
Finally, HNF is actively committed to increasing awareness of CMT through all available media outlets, including print, radio and television as well as fundraising programs. We believe that by putting CMT on the national health care agenda we increase funding for research and increase public support and understanding for those affected by the disease. In addition, through advocacy initiatives, HNF provides 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) that 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 things 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 awarded a multi-year grant to HNF to create a National CMT Resource Center. This cooperative agreement will result in a premiere site for the world to connect to all things related to CMT, a place where people affected by the disease, those who care for them, and medical professionals can find comprehensive resources, essential information, and educational materials about Charcot-Marie-Tooth disease.