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Diagnosed with dementia and doing something with a difference

Despite being diagnosed with frontotemporal dementia (FTD) and younger onset dementia, 61-year-old Greg Kelly is tackling dementia head-on by raising funds and awareness with a ride across Australia.

Greg Kelly rides across Australia as part of 'Kell's Ride for the Future' (Source: Greg Kelly)
Greg Kelly rides across Australia as part of 'Kell's Ride for the Future' (Source: Greg Kelly)

Kell’s Ride for the Future’ will take Mr Kelly across 400-500 kilometres of country each day on his Harley Davidson with the aim of raising $40,000 towards dementia research and the hope of capturing the attention of “those with the money to make a difference”.

When Mr Kelly was diagnosed by his specialist, like most people his initial reaction was shock, to hear that within 5 years he will forget all his friends and family, and that in the following 18 months-2 years, he would die from organ failure.

According to Alzheimer’s Australia, Mr Kelly is just one of an estimated 3,500-11,500 Australians currently affected by FTD, however many, if not most people with FTD are considered to be misdiagnosed and often treated for psychiatric disorders, depression or Alzheiner’s itself.

Unlike many, the shock of diagnosis didn’t last long for Mr Kelly when he was told that what is currently the second biggest killer in Australia was expected to take the top spot.

“I was 59 when I was diagnosed and when the specialist told me he said that I had an expectancy of 6-8 years and to get my affairs in order,” Mr Kelly explains.

“They told me that there was no cure – no treatment. I can’t go through chemotherapy, I can’t take a tablet. They told me this type of dementia is more aggressive than what you get in your 80’s and it is essentially eroding and shrinking my brain.

“I was shocked but relieved because I knew what I was up against.

“And then the specialist told me that dementia, just like I had, was predicted to be the number one killer of Australians within 5-10 years.

“This is what has me fired up so much; knowing that so few people are aware of how big of an issue this is.

“I don’t know about you, but I don’t want my boys, my grandchildren or anyone else’s family to be facing this as the number one killer.

“This is where ‘Kells Ride for the Future’ comes in. I want a better future for my children, their children and other families.”

So, Mr Kelly, with the support of his wife Janet, took to writing to CEO’s about not only his journey, but also the reality that was facing so many Australians.

Greg Kelly with Alzheimer's Australia Ambassador Ita Buttrose (Source: Greg Kelly)

After gaining some sponsors and talking to “those looking down the microscopes” and finding that there was not enough funding, Mr Kelly set himself some goals for the ride, which commenced in Queensland on 12 August.

“We have increased our home loan to make this all happen and now we do have some wonderful sponsors and are about half way to our $40,000 fundraising goal,” Mr Kelly says.

“My big goal is to see the top 500 earning companies donate just half of a percent of their profits to not only dementia research, but research for the top 10 biggest killers in Australia.

“Having that kind of support from the people with the money to make a difference is what I really want to achieve.”

Despite taking on the challenge with a smile on his face, Mr Kelly admits he is spending a lot of time away from his wife and family but says the ride is something he has to do.

“I’d love to be taking my wife away for the weekend and spending my time with her, but I’ve got to do this for everyone,” he explains.

“This disease doesn’t care who you are, if you are human, you are at risk.

“I told my wife that while our youngest finishes year 11 and 12 I will go and turn the lights on for people and put every ounce of energy and brain power that I have left into this.

“When our son finishes school, then we will certainly have a lot of things to tick off of our bucket list – I have 50 years of living to jam into 4-5 years.

“It’s definitely a busy time ahead but like the ride, I will do it all with a smile on my face.”

Following the ride around Australia, Mr Kelly plans to take the ride and the cause to both New Zealand and the US where dementia is currently the third biggest killer.

Alzheimer’s Australia has expressed extreme gratitude to Mr Kelly for his generosity, courage, support and for sharing his experience to increase awareness for FTD and younger onset dementia in Australia.

“We are so grateful to Greg and to all the dedicated and generous fundraisers in our community who so selflessly give their time and energy to raising funds and awareness for our organisation to support people living with dementia, their carers and families,” Alzheimer’s Australia CEO Maree McCabe says.

“An increased awareness about all forms of dementia and elevating awareness and understanding will result in reducing stigma and social isolation.

“This gets people talking about dementia and seeking support earlier.”

‘Kell’s Ride for the Future’ is taking place from now until 23 October 2017 and donations can be made online via Mr Kelly’s GoFundMe page.

All funds raised through ‘Kell’s Ride for the Future’ will go to Alzheimer’s Australia and Australian Frontotemporal Dementia Association(AFTDA).

‘Kell’s Ride for the Future’ will run throughout September during Dementia Awareness Month.

If you or someone you know is living with dementia and needs support, call the National Dementia Helpline on 1800 100 500.

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