In May of 2005 John Egan 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. The disease is invariably fatal. I am John's son, Sean. I am gene positive for HD.
I am riding my push bike from Perth to Melbourne in September, to not only raise money and awareness about HD, but also as a tribute to my dad-a true inspiration.
My aim is to ride between 160-180km a day across the Nullabor; a test of endurance in recognition of the suffering my dad experienced during his 20 year struggle with HD.
Although there is no cure for HD, support and services can help improve the quality of life for families like mine 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.
Please support me in my efforts to help provide much needed assistance to HD sufferers, their families and the 2,500 Victorians at risk of developing this debilitating and cruel disease.
Click here to read more About Me....