Educating the patient community, medical professionals and the public.
Hereditary Neuropathy Foundation (HNF) is one of the leading non-profits dedicated to improving the lives of individuals affected by Charcot-Marie-Tooth (CMT) and inherited neuropathies. Since HNF’s inception, we have worked with the CDC to disseminate information to educate the patient community, medical professionals and public at large.
We have funded well over one million dollars for basic and translational research and are working closely with industry to support clinical trials to meet the needs of our grossly underserved community. We are in the process of implementing a strategy to help eliminate the barriers to patients obtaining accurate diagnosis, which is necessary to identify specific mutations for clinical trials.
Unfortunately, commercial laboratories charge high prices to insurers and families, limiting the availability of genetic testing today. Often insurance carriers are denying these tests especially when there are no treatment options that will alter the course of medical intervention. This in turn will limit the number of patients accurately diagnosed and available to participate in clinical trials.
Imagine if genetic testing can be performed prenatally or at birth, enabling potential treatments to begin early on before the disease has done irreversible damage. Imagine with increased and accurate diagnosis, our voice is strengthened and funding resources are increased. To date there has only been one newborn screening approved for a neuromuscular disease which is fatal, Pompe disease, and only in limited states.
Although most of the inherited neuropathies are not fatal, some are, such as Giant Axonal Neuropathy and several forms of CMT that may cause vocal cord paresis and breathing complications, which indeed may have an impact on life expectancy. Stay tuned as we share our strategic initiatives, ask for your support and report our progress. If we work as a team, we will get there much faster!