ARARAT - Keep an eye out this weekend for cyclist Sean Egan, who is cycling from Perth to Melbourne to create awareness off, and raise funds for, research into Huntington's Disease.
He will make a stop over in Ararat on Friday and Saturday and is being accommodated by Rob and Cilla Rayner of the Statesman Motor Inn, who have generously assisted with some of the costs.
The St Mary's Catholic Parish will also host a barbecue in the church grounds during Friday afternoon and junior cyclists will ride part of the way with Sean to support him.
In May of 2005 John Egan, Sean's father, died of Huntington's Disease (HD). HD is an inherited neurological condition which slowly destroys the brain cells that affect the way people think, feel and move. There is no treatment, no cure and the disease is invariably fatal.
Sean is gene positive for HD.
He is currently riding his push bike from Perth to Melbourne to not only raise money and awareness about HD, but also as a tribute to his dad - a true inspiration.
Although there is no cure for HD, support and services can help improve the quality of life for families like Sean's who are living with this condition. Huntington's Victoria connects families with the support services, advice and information they need. They also offer professional education, promote research into the condition and advocate for improved access to services for the HD community. Huntington's Victoria is a not-for-profit organisation and relies on funding from government and donations from the public.
"I was sixteen when my father told me that he had Huntington's Disease. I don't remember feeling upset by the news. I didn't know the devastating effect that HD would have on my family,'' Sean said.
"A person with HD may live for 15 to 25 years after developing their first symptoms, but the disease is invariably fatal. The average person with HD will die in their 50s.
At present Sean doesn't have any symptoms, but does carry the HD gene. This means that at unless a cure is found he will develop the disease at some stage in my life.
While Sean rode and participated in events such as The Great Victorian Bike Ride and Round the Bay in a Day, it was not until his father died that he got serious and decided it was time to do something for him.
"The day after his funeral I started training furiously for the Melbourne to Warrnambool Cycling Classic; a professional, one day race of over 300km. Two weeks out from the race I purchased my new bike; a final gift from Dad,'' he said.
"I began planning a bike ride across Australia. I wanted to try to do something physically difficult to honour the courage and determination with which my father lived his life.
"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.''
Donations to Sean's cause can be made by sending a cheque marked `Sean's Ride' to Australian Huntington's Disease Association, Huntinton's Victoria, PO Box 60 Holmesglen Vic 3148.
They can also be made at the barbecue on Friday.