September 2008

A Melbourne schoolteacher will be passing through Adelaide on 22^ndSeptember on his bike on his way to Melbourne from Perth.

Sean Egan is taking on the extraordinary task to raise awareness of a genetic disease that affects him and his family.

On September 12, Sean headed off from Perth, aiming to ride between 160-180km a day for 24 days across the Nullarbor, a test of endurance in recognition of the suffering his father experienced during his 20 year struggle with Huntington’s Disease.

Sean currently has no symptoms but has tested gene-positive for the genetic, neurological condition that killed his father.

‘This means that at unless a cure is found I will develop the disease at some stage in my life,” he said.

Sean said the trip was a way of honouring his dad: “I wanted to try to do something physically difficult to honour the courage and determination with which my father lived his life.”

Sean is riding to raise both awareness of the fatal disease and to raise money for research.

“A person with HD may live for 15 to 25 years after developing their first symptoms, but the disease is invariably fatal. Dad died at the age of 64. The average person with HD will die in their 50s.”

Sean said he had been training for the ride by cycling 300 to 400 km each week – and up to 600km during school holidays.

 “I think becoming gene positive made me think about getting more out of life and it definitely caused an increase in the amount of exercise I did. There is some scientific evidence that being active, can delay the onset of the disease.

“I want to show people that despite the setbacks life throws at us, we are all capable of achieving amazing things. When I think about what Dad went through, failing to complete the ride is not an option.”

You can help by sponsoring Sean's ride and contributing to Huntington'sVictoria. Please contact Huntington's Victoria on (03) 9563 3922 and give your credit card details. Don't forget to mention Sean's ride when you make your valued contribution.

Make cheques payable to Australian Huntington's Disease Association (Victoria) and mark them "Sean's Ride". Mail to Huntington's Victoria PO Box 60 Holmesglen VIC 3148

If you wish to sponsor Sean's Ride or offer help in any way, contact Linda Perkins at lgperkins13@bigpond.com