Team FARA members are running, walking, biking and swimming for FA research around the world. While they are geographically dispersed, Team FARA is united with the same goal: to draw attention to FA through acts of physical endurance and to support the advancement of FA research towards treatments and a cure for FA.
Check this out...
A woman is going to run a 7 day Ultra Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website: "By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world. Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do.
The main thing, though, is that I am doing it for a wonderful and most worthy cause, which I do hope you will support. Friedreich's Ataxia (FA) is a cruel disease of which there is no known cure. It is a debilitating, life-shortening, degenerative, neuro-muscular disorder.
I have watched its cruel and relentless progress affect the health of the daughter of my very good friends in Hong Kong, Angelo and Monica Pepe. Angelo worked tirelessly raising funds for research into the disease, and spent lots of his own money too. Sadly, Angelo succumbed to cancer at the end of 2008, and, before he died, I promised myself that I would try and help towards his work, and raise money for research in the hope that a cure can be found.
The charities for which I will be raising money are Ataxia UK and Friedreich's Ataxia Research Alliance (FARA). FARA is a non-profit, tax-exempt organisation dedicated to curing FA through research, pharmaceutical/biotech drug development, clinical trials and scientific conferences."