Get all your news in one place.
100’s of premium titles.
One app.
Start reading
ABC News
ABC News
Health

Simon and Jack Lundy take on Huntington's disease charity ride to Alice Springs

Taking only their clothes, tents and suspension-free bikes, father and son Simon and Jack Lundy have cycled from Perth to Alice Springs in support of families affected by a rare disease.

It came after Simon's father Graham was diagnosed in 2005 with Huntington's disease, a rare and debilitating neurodegenerative disease that he wrestled with until his death in 2020.

For Simon, it was a devastating experience watching his father's long and slow decline.

"It's a horrible disease … you've watched someone in your family go from being fit and healthy, and they're doing all the things that you can do, and all of a sudden, they start to decline," he said.

"They're just not the same person mentally or physically.

"It's really quite sad."

It pushed Simon, who works in medical sales, to live life to the full and "do as much as you can".

Trip of a lifetime

Simon and Jack took off on October 21 on a 2,600km bike ride from southern Perth to Alice Springs to raise funds and awareness for Huntington's Western Australia.

The duo cycled to Kalgoorlie, through to Laverton and then across the Great Central Road to Uluru in 18 days. 

They enjoyed a stretch of cooler days and easier riding over the first section before the route threw up multiple hurdles during the 1,500km from Laverton to Uluru.

The pair would occasionally resort to walking as they contended with heavily corrugated roads, 80km/h wind gusts, wash-outs and maximum temperatures above 35 degrees Celsius.

Despite the challenges, it was an uplifting experience for year 10 student Jack who had "never been inland from the west coast" and welcomed the encouragement and support of strangers along the way. 

"Everyone's stopping, slowing down and asking about it [the ride] ... and just want to know what you're doing," he said.

Living life to the full

The trip was an opportunity of a lifetime for the pair to celebrate the importance of family and healthy living against the backdrop of illness and uncertainty.

"I'm very proud of Jack completing this … couldn't be prouder," Simon said.

"Once we got to Uluru and then on to Alice, I thought you can do anything really."

Jack said the ride prompted him to contemplate the role that Huntington's had played in his family. 

"I've grown up with it ... my whole life really I've really seen it," he said.

"So it's a big thing to contribute to."

Simon also reflected on the uncertainty that the disease played in his life.

As the son of a carrier of the disease, Simon has a 50 per cent chance of having Huntington's himself, a possibility that he does not want confirmed by a genetic test.

"After watching my father go through it … obviously I hope that's not me, but if it is, then that's the way it is," he said.

"I can't change that.

"So you hope to spread the word and get as many people on board with doing this type of thing because it might one day be me that needs the support."

Sign up to read this article
Read news from 100’s of titles, curated specifically for you.
Already a member? Sign in here
Related Stories
Top stories on inkl right now
Our Picks
Fourteen days free
Download the app
One app. One membership.
100+ trusted global sources.