Still fighting for a cure for MND

WHEN Geoff Fary’s wife Monica announced that she had been diagnosed with MND, he recalled hearing the three initials without fully comprehending their meaning.
When she next pointed Geoff in the direction of reference material so he could grasp the gravity of she had just said, an awful reality quickly dawned on him.
“I didn’t really know what it was, or the difference between MND and MS … the more I found out about motor neurone disease, the more horrified I became,’’ he said.
“It was a terrible time and we still have memories that are not terrifically pleasant.’’
Monica Hayes lost her brave battle with MND in August 2016. Geoff lost his wife, their son Sam and daughter Bec lost their mother. Portarlington, where Geoff still lives today, lost an active, remarkable, much-loved member of its community.
Geoff is now an MND ambassador. He helps people understand and educates them about the disease, is available to talk to families touched by it, and is involved in fundraising activities which raise essential monies that go towards the ultimate goal of finding a cure.
The cause has attained national and international attention through high-profile MND patient and former AFL player and coach Neale Daniher, and the annual Big Freeze event each Queen’s Birthday Monday at the MCG. FightMND have transformed this year’s Big Freeze 6 event into a virtual challenge, calling on people to fill the MCG virtually.
“I first became involved while Monica was still alive in Daniher’s Drive, an annual event touring regional Victoria, NSW and South Australia, which came to Portarlington last year,’’ Geoff said
“A couple of years ago they (the foundation) were good enough to designate me as an ambassador for FightMND.
“I talk to groups about what MND is, the work that the foundation is doing in trying to raise funds for medical research for medical treatment and ultimately to try and find a cure.
“The reason that Daniher’s Drive visited Portarlington last year was that the town has rallied behind the cause in quite an extraordinary way.
“The support they gave to me and our family after Monica’s diagnosis and subsequent to her death, has just been unbelievable.
“It’s a generous and caring little community, that generosity extended to the amount of money they have donated to team Team Monica Hayes through Daniher’s Drive, raising more than $100,000 which is a mighty effort from a small community without large corporate support.’’
MND patients on average have a life expectancy of 28 months from diagnosis to death.
The insidious disease slowly and subtly diminishes the ability of the neurones, which are the messengers that carry signals from the brain, to continue to function, attacking the muscles around the neck, mouth and throat, making it difficult to speak and swallow.
This was the case for Monica, who despite these challenges, retained much of her mobility until the end.
“In all cases of MND, or virtually all cases, people retain their cognitive ability to the very last, so the awful reality of this disease is people watch themselves slowly die,’’ Geoff said.
“Monica was still cogent, clearly cogent until the day she died. The day she died was the first day she didn’t get out of bed.’

’Geoff has a wonderful admiration for Neale Daniher, the profile he has given the disease, and the fundraising effort which has exceeded all initial expectations.
“He’s a remarkable fellow in many respects – a total outlier in terms of his survival. Monica’s been gone four years and he’s still going,’’ he said.
“The awareness of the disease is much higher now. When FightMND started out, it had a modest objective to raise maybe $100,000. It’s now raised more than $40 million, and that money is now funding research at a variety of institutes in Australia and around the world.
“It’s produced promising results so far, and some potential treatments that are about to go to human trial.’’
Geoff hopes this progress will help gradually to extend people’s lifespans where, as he says, people with die with, but not of, MND.
He also paid tribute to another organisation, MND Victoria which pre-dates the FightMND foundation.
Its focus is the care of people who have the disease, providing them with moral support, mobility assistance and equipment, finding more effective treatments and a cure.
The coronavirus crisis means there will be no Daniher’s Drive this year, but it hasn’t stopped the sale of the ubiquitous FightMND blue beanies, a sight that always signals light and hope for people such as Geoff.
“When you see people wearing them at a game of footy or walking down the street wearing a beanie you get a bit of a buzz from both. People are remarkably generous, as are the local businesses who kick in and support that.
“Rick and Jenny here, who run the post office, told me earlier this week someone came in and bought a couple of beanies for $20 and then put $300 on the counter to say ‘that’s just another donation for the cause’. And they didn’t want any acknowledgement. That’s just amazing.’’
Equally amazing is the spirit of people such as Geoff, and Neale Daniher, and countless others who will never give up hope of finding a cure
“MND, heart disease… cancer hasn’t gone away, mesothelioma… we’ve still got to maintain the focus,” Geoff said.
“Buy a beanie – make sure you’ve got the full collection and support the foundation, make yourself aware of what the condition is.
“As Neale says, when people say there’s no cure for MND, his response is ‘Yes there is, we just haven’t found it yet’.’’
If you would like to make a donation to support Team Monica Hayes, or to find out more about MND, please contact Geoff directly on 0419 972 653.
For more information about MND and this year’s virtual Big Freeze event, head to fightmnd.org.au.