Friedreich Ataxia Research Association New Zealand (FARA NZ)

Friedreich Ataxia is a slow, progressive disorder of the nervous system and muscles, which results in an inability to coordinate voluntary muscle movements (ataxia). The onset of symptoms is gradual and progressive – affecting the person’s coordination, mobility, speech, and heart function. Onset of symptoms occurs between 5-15 years of age, however can appear as early as 18 months or as late as 40 years of age. It is a rare condition, with one in 50,000 affected and females and males equally. The cause of FA is an altered gene, affecting the production of a protein called frataxin. The reduction in the amount of frataxin affects muscle and nerve cells resulting in cell damage and cell death. Gradual loss of function occurs as a result of this damage.

Signs and Symptoms of FA usually become noticeable during the early teenage years, though this can vary. The first symptoms are usually difficulty with balance and impaired coordination in the arms and legs. As time goes on, other symptoms occur such as; fatigue, slurred speech, hearing loss, aggressive scoliosis (curvature of the spine), pes cavus (high arches in the feet), diabetes mellitus (insulin – dependent, in 20% of people with FA) and serious heart conditions, including hypertrophic cardiomyopathy and arrthymias.

Up to 1 in 90 people in New Zealand are carriers of the gene and when both parents are carriers (and show no symptoms of the condition) there is a 1 in 4 chance of having a child with FA as the altered gene is recessive. This means there can be more than one child in a family with FA though there may be no family history of the condition.

The Friedreich Ataxia Research Association New Zealand (FARA NZ) is a charitable organisation set up to improve the quality of life for people diagnosed with FA, by supporting them and their families and to assist the funding of scientific research to treat this rare neurological degenerative condition.

FARA’s primary objective is to raise funds to support international research and to accelerate patients into clinical trials for new therapies in order for us to find a cure for Friedreich Ataxia.