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

Lady in high vis vest smilingThank you Marian Lowe for your hard work and dedication over 28 years as a MND Victoria volunteer!

Marian writes, "From Cakes to Kokoda ... Fundraising—it’s the ‘f’ word that is a constant in the vocabulary of organisations such as ours.

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.

In 1990 when I first became involved with the MN Society as it was then, the need for funds was critical. Volunteers stood at strategic places during MND week shaking cans and answering the common question –“What is MND? Can you get it from driving a car?” Support groups would hold stalls, raffles and trivia nights, the Gippsland group was famous for its Soup and Sandwich day, and a member of the Outer Eastern Group ran a ‘tattslotto’ every month for years using the supplementary numbers. There was a sock drive, open gardens, lunches and dinners, and one of my favourites – a no effort fundraiser where people were asked to donate a sum of money in lieu of baking a cake, manning a stall etc.

Then of course there were Christmas card sales which brought in 1000’s of dollars in the early days, as did the annual fete where you had to get in early for the homemade apricot jam and lemon butter! We selected wines that were bottled with a MND label and took orders from around the State.

One enterprising member started collecting corks, this soon ballooned out into the “Equipment, it’s a Corker!’ programme. At its height there was a team of volunteers who regularly sorted out the wires, caps and occasionally money, which came with the bags of corks. It was also a great way of promoting the Association. Local Rotary and other community groups got involved, I think the idea of buying a wheelchair from sales of corks appealed to people. We even had corks sent over from a winery in South Australia. Sadly it came to an end when the firm who bought the corks for recycling decided it was easier and cheaper for them to purchase overseas.

Hundreds of boxes of cornflowers were made up for MND week and distributed to support groups and members. My own group would distribute around 200 boxes in Knox City shopping centre the week before and collect them the week after. This finally came to an end when shops changed to having miniscule counters.

With Judith Durham’s influence, we collected donations in buckets at the end of Seekers concerts. Judith would talk about MND and the Association before the last song, and the generosity of the audience as they left was overwhelming. The ice bucket challenge caught the imagination of the public and ricocheted around the world.

The bequest programme was set up in the 1990’s along with the MND Care Foundation to provide financial security for the Association. Walk to D'feet MND started in Melbourne, but quickly took off in different regions of Victoria and interstate. Not only do the Walks raise significant funds, but bring together the MND community in relaxed and friendly atmospheres. It is always a challenge to think up something new and recently extreme events have answered that. Walking on the Great Wall of China, battling the Kokoda Track and now trekking the Larapinta, appeal to the young and the fit who must raise significant sponsorship money as one of the conditions of registration.

There are many other ways, too many to mention here, that members and supporters have employed to bring in funds. But from ‘cakes to Kokoda’ every cent is a valued contribution to the care of people living with MND and to the research that will one day find a cure. 


Read more MND stories:

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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 ...

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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.

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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.

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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.

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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.

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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 ...

/Dean%20+%20Paula's%20MND%20Story

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.

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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.

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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.

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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 ...

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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 ...

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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.

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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 ...

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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 ...

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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.

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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?

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

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