Until there's a cure ... there's care

Boat, sunset, crowd doing Ice Bucket Challenge

Gavin McCann was diagnosed with motor neurone disease in January 2015. Being told this news is devastating for anyone. Gavin however, used this news to live out his long time dream. He didn’t once complain what was going to happen to him. He instead bought a boat. From that day on, Gavin says “I live with a smile on my face every single day”.

Gavin is certainly unique. Not only did he just buy a boat, he lives on it. After initially docking the boat in Apollo Bay, which was close to his home in Colac, he came across Bill, who suggested he take his boat across the state to the Gippsland Lakes at Paynesville. Why you may ask? The winds down at Apollo Bay really didn’t suit being on a boat as you start losing the strength in your legs.

Bill introduced Gavin to the Paynesville Motor Cruiser Club and the many locals associated with it. Gavin has found himself a new family, a community who has got behind him to help him live the best life possible.

Living on a boat with MND at first thought sounds incredibly risky, maybe even naïve. Gavin dispelled all those thought quite quickly, maybe it was his infectious smile and positive outlook? Nevertheless, he explained that boats are compact, he can reach everything in each part of the boat, even if he has to lean on walls. It has hand rails everywhere and even rails on the roof to hang on to. There is no glass in the shower or anywhere else.

He continued to explain he can live independently on his boat whereas if he has to make the trip back to his home in Colac, he needs constant help from his wife.

I think it is fair to say that doing the washing doesn’t excite anyone. Gavin is an exception. The washing machines are in a facility on the other side of the marina. How does Gavin manage to do this? He jumps on his jet ski with his washing basket, heads on over and then spends the next hour just cruising through all the canals until the washing is done.

Gavin has constant ideas on how to adapt his boat to accommodate the progression of MND. The community around him help in everyway they can to implement these ideas and modify his boat accordingly. There is nothing the power of community can’t accomplish in situation’s like Gavin’s.

Everyone at the Motor Cruiser Club has been so touched by Gavin’s story that they are throwing a fundraising event in his honour in April. A traditional ice bucket challenge with a twist. On the boat with many people suffering the fate of ice cold water dunked on them by a special creation by Gavin. There will be live bands, hundreds of people watching from the balcony and the support of the whole community.

Vita brevis est edite primum secondam. This is the quote on the front of Gavin’s boat. He says it translates to ‘life is short, eat the first seconds’. Gavin is adamant that he will keep maximising the time he has left. He only gets off his boat every couple of months when he needs to head back to Geelong for specialist appointments. He understands what motor neurone disease is doing to him but he intends on ‘living the dream’ right to the very end!


Gary has been involved with MND Victoria since the 90s. He has been converting MND Victoria Newsletter into online news for worldwide audiences for 10 years...


Maureen, one of our wonderful volunteers and a past carer of someone living with motor neurone disease wrote this poem 'Caring and Sharing' about her experience during the time.


My beautiful son Robert, Robbie to all who know him, was diagnosed in May 2017 and our world hasn't been the same. At the start, life wasn't too bad as Robbie was fiercely independent ...


As I step back from my role as a volunteer in the fundraising area, I’ve been thinking of all the past efforts that have helped make the Association so successful.


I find myself engrossed in wonderful, now precious, memories. I laugh at flashbacks which come to mind. I laugh, then I cry, remembering you're gone.


I am 86 years old and up until June 2018, I was a reasonably healthy person who led an active life and loved communicating/ socialising with family and friends.


Did you know that we have two equipment volunteers who help our Equipment team supporting people...


An Ode to MND is a poem about daily life whilst living with motor neurone disease written by Joy who had MND.


My two boys Marcus (10 years old) and Harry (8 years old) unfortunately lost their nana to MND in April 2018.


In my time at MND Victoria so far I have had the chance to engage with individuals whose resilience in the face of adversity is inspiring.


Brian was the last to go. He too died from motor neurone disease – that is the disease whereby the neurons stop working and cannot convey messages to the muscles ...


41 year old Dean is married to his childhood sweetheart Paula and father to two teenage boys ... in July 2015 their life came to a halt when Dean was diagnosed with MND.


When Pam’s son was diagnosed with MND three years ago, she didn’t know what to do. As a mother she felt so useless, she couldn’t do anything except love him.


Gavin McCann was diagnosed with motor neurone disease in January 2015. Being told this news is devastating for anyone. Gavin however, used this news to live out his long time dream.


Andy's MND journey began after noticing difficulties with slurring speech. Medical investigations led to a local neurologist in May 2015, who suggested motor neurone disease ...


I was a stay at home single mum with 3 children aged 5, 7 and 9 in 2003 and my youngest was recovering from cancer treatment. I had left my husband in 2002 ...


Rebecca Mason more than deserves the title of legend. Beck lives in Portland but makes the trip up to Geelong regularly to be with her best friend who has MND.


Went to a medical appointment recently at our local medical centre in Emerald, Vic, in my Frontier Tilt in Space wheelchair supplied by MND Vic ...


Not only is this disease so horrible to endure for the sufferer of MND. But the other side of the coin is the partner and family trying to cope with the emotional issues ...


This experience not only significantly impacted my life, but also helped me develop as a person and become who I am today and the person I will become tomorrow.


I can talk, I can walk, I can swallow, I can read, I can write, I can itch my head if I need to, I can laugh when I want to. I can wipe my own tears. You're thinking, what's the big deal?


A poem written by one of our volunteers about her experience of motor neurone disease ...

"It’s the understanding, knowing that when I phone you, MND Victoria always understands ...
I remember the first time I ever heard the words “Motor Neurone Disease”.
On March 28 this year my partner of 21 years died in my arms. She was 54 years old when diagnosed in June 2016
Last year’s Camino walk was raising money for those that can’t do it and it was in memory of my husband and his father.
My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs.
Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze.
Neither John nor I expected this ... when the future with MND was explained it felt like we’d been hit by an express train.
When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3-year-old son, Mark.
I have been let’s say, "fortunate" enough to have had MND for nine years, instead of the average two ...
As Brett’s disease was progressing very fast, his life expectancy was about nine months.
Carol and I had retired from a lifetime of farming and were planning to grow old together ...