Every step helps.
When we were 18 my mother took us to see a neurologist because of our increasing clumsiness. He made a clinical diagnose that we had FA and sent us for a battery of tests with a variety of specialists. Little was known about FA and it was suggested that life expectancy for us would only be 5 to 10 years. That was 23 years ago. A few years ago I had a DNA test done which confirmed Friedreich's Ataxia.
My younger brother, Joshua, does not have FA but is committed to helping find a cure for this disease.
A few months ago Joshua approached me suggesting that we should organize and host a fundraiser to help with the exorbitant research costs of FA. We were put in touch with Jean Phenix of CAFA who was able to help us plan and organize this event. He was able to secure our first corporate donor which indeed kept us motivated.
At this point we are looking towards a final resolution to FA and to prevent other families from going though the same pain that we have.
For more information on FA, check out my website at www.friedreichataxia.info
