{"id":32519,"date":"2020-06-04T00:35:07","date_gmt":"2020-06-03T14:35:07","guid":{"rendered":"https:\/\/timesnewsgroup.com.au\/geelongtimes\/?p=32519"},"modified":"2020-06-03T16:00:14","modified_gmt":"2020-06-03T06:00:14","slug":"still-fighting-for-a-cure-for-mnd","status":"publish","type":"post","link":"https:\/\/timesnewsgroup.com.au\/geelongtimes\/news\/still-fighting-for-a-cure-for-mnd\/","title":{"rendered":"Still fighting for a cure for MND"},"content":{"rendered":"

WHEN Geoff Fary\u2019s wife Monica announced that she had been diagnosed with MND, he recalled hearing the three initials without fully comprehending their meaning.
\nWhen 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.
\n\u201cI didn\u2019t really know what it was, or the difference between MND and MS \u2026 the more I found out about motor neurone disease, the more horrified I became,\u2019\u2019 he said.
\n\u201cIt was a terrible time and we still have memories that are not terrifically pleasant.\u2019\u2019
\nMonica 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.
\nGeoff 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.
\nThe 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\u2019s Birthday Monday at the MCG. FightMND have transformed this year\u2019s Big Freeze 6 event into a virtual challenge, calling on people to fill the MCG virtually.
\n\u201cI first became involved while Monica was still alive in Daniher\u2019s Drive, an annual event touring regional Victoria, NSW and South Australia, which came to Portarlington last year,\u2019\u2019 Geoff said
\n\u201cA couple of years ago they (the foundation) were good enough to designate me as an ambassador for FightMND.
\n\u201cI 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.
\n\u201cThe reason that Daniher\u2019s Drive visited Portarlington last year was that the town has rallied behind the cause in quite an extraordinary way.
\n\u201cThe support they gave to me and our family after Monica\u2019s diagnosis and subsequent to her death, has just been unbelievable.
\n\u201cIt\u2019s a generous and caring little community, that generosity extended to the amount of money they have donated to team Team Monica Hayes through Daniher\u2019s Drive, raising more than $100,000 which is a mighty effort from a small community without large corporate support.\u2019\u2019
\nMND patients on average have a life expectancy of 28 months from diagnosis to death.
\nThe 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.
\nThis was the case for Monica, who despite these challenges, retained much of her mobility until the end.
\n\u201cIn 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,\u2019\u2019 Geoff said.
\n\u201cMonica was still cogent, clearly cogent until the day she died. The day she died was the first day she didn\u2019t get out of bed.\u2019<\/p>\n

\"\"
Monica Hayes and Geoff Fary with their children Sam and Bec.<\/figcaption><\/figure>\n

\u2019Geoff has a wonderful admiration for Neale Daniher, the profile he has given the disease, and the fundraising effort which has exceeded all initial expectations.
\n\u201cHe\u2019s a remarkable fellow in many respects – a total outlier in terms of his survival. Monica\u2019s been gone four years and he\u2019s still going,\u2019\u2019 he said.
\n\u201cThe awareness of the disease is much higher now. When FightMND started out, it had a modest objective to raise maybe $100,000. It\u2019s now raised more than $40 million, and that money is now funding research at a variety of institutes in Australia and around the world.
\n\u201cIt\u2019s produced promising results so far, and some potential treatments that are about to go to human trial.\u2019\u2019
\nGeoff hopes this progress will help gradually to extend people\u2019s lifespans where, as he says, people with die with, but not of, MND.
\nHe also paid tribute to another organisation, MND Victoria which pre-dates the FightMND foundation.
\nIts 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.
\nThe coronavirus crisis means there will be no Daniher\u2019s Drive this year, but it hasn\u2019t stopped the sale of the ubiquitous FightMND blue beanies, a sight that always signals light and hope for people such as Geoff.
\n\u201cWhen 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.
\n\u201cRick 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 \u2018that\u2019s just another donation for the cause\u2019. And they didn\u2019t want any acknowledgement. That\u2019s just amazing.\u2019\u2019
\nEqually 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
\n\u201cMND, heart disease… cancer hasn\u2019t gone away, mesothelioma… we\u2019ve still got to maintain the focus,\u201d Geoff said.
\n\u201cBuy a beanie – make sure you\u2019ve got the full collection and support the foundation, make yourself aware of what the condition is.
\n\u201cAs Neale says, when people say there\u2019s no cure for MND, his response is \u2018Yes there is, we just haven\u2019t found it yet\u2019.\u2019\u2019
\nIf 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.
\nFor more information about MND and this year\u2019s virtual Big Freeze event, head to fightmnd.org.au<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

WHEN Geoff Fary\u2019s 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. \u201cI didn\u2019t […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":156,"featured_media":32520,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[7],"tags":[],"post_folder":[],"class_list":["post-32519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"acf":[],"yoast_head":"\nStill fighting for a cure for MND - Geelong Times<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/timesnewsgroup.com.au\/geelongtimes\/news\/still-fighting-for-a-cure-for-mnd\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Still fighting for a cure for MND - Geelong Times\" \/>\n<meta property=\"og:description\" content=\"WHEN Geoff Fary\u2019s wife Monica announced that she had been diagnosed with MND, he recalled hearing the three initials without fully comprehending their meaning. 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