Hungary To Find A Cure!

First, a bit of background..

6-and-a-bit years ago, I started dating my now-wife, Lydia Boon. Lydia is the youngest of five children in the Boon family. In age order, they are; James, Elizabeth, Joe, Therese and, of course, Lydia. James, Joe, and Therese live with Friedreich Ataxia (FA) - a slow, progressive disorder of the nervous system and muscles, which results in an inability to coordinate voluntary muscle movements (ataxia). FA currently has no known cure.

In the 6-or-so years that I have known the Boon Family, I have seen the effects of FA first hand as James, Joe, and Therese have courageously lived their best lives while dealing with this debilitating condition. Rather than me explain it, check out the fantastic mini-documentary made by James Boon a few years ago - it's embedded into this page!

So what am I doing to support the cause?

WELL, I'm pleased you asked! I will be participating in the Budapest Marathon on Sunday 29th September, 2019. This is my first marathon and I am 'Running for FA'. All funds raised will be donated directly to the registered charity, Friedreich Ataxia Research Association New Zealand (FARA NZ). FARA NZ has been 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.

What is FA?

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, found on chromosome 9, affecting the production of a protein called frataxin needed by the mitochondria. 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. FA reduces life expectancy; however some people with less severe symptoms live through to their sixties or seventies.