Chief Executive Officer at fara Australia - Friedreich Ataxia Research Association - Melbourne, Victoria, Australia
The Friedreich Ataxia Research Association (fara Australia) is a not-for-profit that supports research into treatments and a cure for Friedreich Ataxia (FA). FA is a rare, debilitating, life shortening, degenerative, neuromuscular disorder, which affects about 1 in 30,000 people in Australia. FA is an inherited genetic condition that causes progressive damage to the nervous system resulting in muscle weakness, loss of balance and coordination, speech problems and heart disease.The first symptoms usually appear between the ages of 5 and 15, and can present as difficulty walking, frequent tripping or being unsteady. Balance and coordination continue to decline over time, and muscles in the legs are easily fatigued, making it increasingly difficult to walk. Most people with FA need the aid of a wheelchair within 10 or so years of diagnosis. As FA progresses, problems with speech and swallowing appear and everyday tasks like writing, dressing, cooking and eating become more difficult. Hearing loss, visual impairment, foot deformity, scoliosis, diabetes and serious heart problems are other complications associated with FA.Research breakthroughs take time and money, and although there has been significant progress, today there is no cure. We are encouraged by the quantity and breadth of research occurring around the world and are hopeful that we may soon have the first approved treatment. Since its establishment in 2003, fara has funded over $4m in research relying largely on the family and friends of FA patients and generous businesses within Australia, to help fund its research programs.fara Australia acknowledges the Boonwurrung people of the Kulin Nation as the Traditional Owners and Custodians of the land on which fara's head office resides. We pay our respects to their Elders past, present and emerging, and celebrate the stories, culture and traditions of Aboriginal and Torres Strait Islander Elders of all communities who also work and live on this land.