Tag: Giant Axonal Neuropathy

An executive with a leading Utah Organization, Daniel J Mannix has also served as a coach of the Utah Prime Lacrosse Club, leading teams to multiple division championships. Daniel J Mannix is also involved with various charity works, one of which is Hannah’s Hope Fund a nonprofit organization for children with Giant Axonal Neuropathy (GAN).

GAN is a rare inherited genetic disorder that affects both the central and peripheral nervous systems. Unfortunately, parents who both carry a copy of the mutated gene do not show any signs of the disease, whose treatment is symptomatic. The majority of children with GAN will begin to show symptoms of the disease sometime before five years of age.

In 2015, Jeffrey Kemp and Daniel Mannix on behalf of Kemp and Associates donated $10,000 to Hannah’s Hope Fund. The donation was to aid in clinical trials to treat GAN which involves gene replacement therapy to the central nervous system. Such donations help to push for fast therapy development in order to save lives.

Based in Utah, Daniel J. Mannix joined of Kemp & Associates in 1986. In addition to his executive responsibilities, Daniel J. Mannix plays an active role in Kemp & Associates’ charitable giving. The organization has made notable donations to Salt Lake City health organization including Primary Children’s Hospital and Hannah’s Hope, a non-profit focused on clinical trials for children with Giant Axonal Neuropathy (GAN).

GAN is a form of amyotrophic lateral sclerosis (ALS) that primarily affects children. Essentially, the gigaxonin gene lets the body make a protein, gigaxonin, that contributes to nerve function. GAN causes a shortage of functional gigaxonin, which makes nerves stop working normally.

Symptoms usually appear before five years of age and include clumsiness and muscle weakness. Over time, children with the inherited condition lose the ability to walk and may experience seizures. Since 2008, Hannah’s Hope Fund has raised more than $6 million to support GAN research and clinical trials.