Most people in Tumut had never heard of Primary Progressive Aphasia (PPA) when the Dean family kicked off a charity golf day five years ago to raise funds for research into the rare neurological syndrome, in which language capabilities become slowly and progressively impaired.
That first golf day came about two years after local Stephen Dean was diagnosed with the incurable condition. Back in 2017 he was still able to play a round of golf and communicate, though the words were coming far less freely.
Fast-forward five years and the event has raised more than $150,000. As organisers gear up for another massive charity day, there’s a waiting list for tee-off times, after which the community will again generously dig deep at an auction.
Sadly, the days of Stephen playing golf or thanking those gathered for their support have long passed. While the charity golf day seems to only get bigger and more successful each year, Stephen’s condition gets worse.
Tomorrow’s charity golf day may be the first one he can’t attend.
His speech has gone, he requires round the clock care and last month he suffered a fall that landed him in Wagga hospital with bleeding on the brain, the family told he probably wouldn’t walk again. He remains in Tumut Hospital, with the hope that he’ll be home in time for Christmas. The upside for Stephen is that he’s supported by an incredible family – his wife Jane and children Jack, Grace and Olivia.
Tomorrow they’ll once more put together all the pieces required to host what will probably be the biggest fundraising event in Tumut this year, channelling funds to the Frontotemporal Dementia Research Group, Frontier, the largest clinic of its type in Australia.
There’s no cure and little chance Stephen will see one in his lifetime, but Jane is hoping the fundraising efforts can play a small role in the long path to finding one.
“I wanted to do something that would hopefully help someone else who gets this terrible disease,” Jane said, describing her motivation for the charity day.
“It’s also to raise awareness. Everyone knows about cancer, or motor neurone disease, or multiple sclerosis. How many people know about Primary Progressive Aphasia?”
Since 2007, Sydney-based Frontier has specialised in the diagnosis, prognosis, and care of people with Frontotemporal Dementia, which encompasses Stephen’s condition (PPA).
Frontier is a group of about 20 research scientists, operating out of the Brain and Mind Centre at the University of Sydney.
Stephen and Jane normally go down there yearly. spending a couple of days undertaking intensive sessions and providing valuable insights to the research team.
Frontier has put the money raised by the Tumut community to good use, across three areas, Frontier’s David Foxe said.
About a third of the funds has been directed towards developing a language assessment app, designed to be used by clinicians all over Australia and the world. The condition is often difficult to diagnose, especially in rural towns that do not have specialist services.
The Deans are a case in point.
They spent more than a year travelling to various doctors, including four neurologists, trying to find what was wrong with Stephen, who was muddling up some of his words, and suffering terrible headaches.
“We went to Albury, Canberra and Sydney,” Jane said. “There was always a long wait to get in to see a neurologist. Finally, the fourth neurologist we saw put us in the right direction.”
While there was relief at a diagnosis, a quick Google search revealed what would be in store for the family.
“It was heartbreaking,” Jane said. “We knew as time went on, things would get worse.”
Another third of the funds raised has been funnelled into setting up a new clinic focussing on speech rehabilitation. Along with intervention strategies to improve speech quality in patients in the early stages of the disease, the clinic also advises people on other strategies that can help improve their quality of life, such as iPads and other aids, allowing people to function better in day-to-day situations.
The final third of the $150,000 is directed to research. Frontier’s research is varied, but has three main areas.
The first is around improving clinical diagnosis. Frontier’s research also spans the different types of Primary Progressive Aphasia. Patients with the disorder vary in terms of their language and functional impairment, Mr Foxe said. Research was desperately needed in improving the management of patients, ensuring they’re integrated into the right allied health services, whether that be occupational therapy or speech pathology.
Finally, Frontier is also working to better understand PPA at the cell level. A pathology lab incorporated into the research group is examining blood, brain scans and brain tissue.
“We’re looking at the nitty gritty cell problems, so that in time, when pharmacies start developing the appropriate drugs, we can ensure the right patients are receiving the right treatment,” Mr Foxe said.
There’s been “profound advancement” in research into PPA over the past 10 years, as brain imaging, blood analysis, and data curation techniques have gone forward in leaps and bounds, allowing researchers to identify things they couldn’t see before.
Still, it’s unlikely there’ll be a cure anytime soon, Mr Foxe said.
“We’re at the early stages,” Mr Foxe said. “As much as anyone, we want to find a cure for the disease.”
Mr Foxe travelled to Tumut last year to attend his first charity day and said he was “blown away” by the sense of community – as well as the beauty of the area.
“It’s such an open-hearted community,” he said. “It was an awesome experience.”
He’ll be back this year with two colleagues and said fundraisers like the charity golf day do more than provide much-needed money for research.
“It motivates me and my team to work harder when see the generosity of this community and what they’re willing to give,” he said. “It’s a boost to our morale. We want to achieve more and greater things. Over and above the money, it’s the spirit of these fundraisers that means so much.”
Mr Foxe, on behalf of Frontier, expressed his gratitude for the amazing work of the Deans.
“They are such a beautiful family and it’s been an absolute pleasure assisting Jane in her quest,” he said. “I’m just amazed she continues to run these events – it’s so impressive seeing the family rally behind Stephen.
For the first time, some of the funds raised at the charity day will be redirected back to the Dean family to assist with modifications to their house, including ramps, to allow Stephen to return to home once he’s released from Tumut Hospital.
The charity event will kick off with the golf, followed by an auction and live entertainment by Andrew Wortes.
Everyone is welcome to head down to the auction, which will begin about mid-afternoon, featuring a raft of sporting memorabilia, accommodation packages, raffles and more.
For those looking to make a donation, Google The Deans – Support Frontier Research Group.
Saturday’s auction items:
Olympian Patrick Scmammell signed Australian polo shirt.
Signed jerseys – 2020 Melbourne Storm, 2021 Manly, 2021 Wests Tigers, 2019 Wallabies, Brandon Smith signed Melbourne Storm, NSW State of Origin (framed); St George, Zac Lomax boots; Sydney Roosters, 2008 Melbourne Storm.
Cricket bat signed by Michael Hussey
McGrath Foundation Pink test cricket cap
Matt Corby-signed three albums
Tumut Blues Cure Brain Cancer Foundation jersey
Football boots signed by Tom Trvojevic
Accommodation package at Quality Rules, Wagga
Ibis Hotel accommodation, plus two Red Hot Summer Tickets, Sydney.