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

by Stefanie Kitsoukilias

2016 marks an extraordinary milestone for MND Victoria. In October the association will be turning 35 and to celebrate this, we are launching a special project celebrating our Social History.

We encourage everyone to get involved by sharing their own stories and pictures either on Facebook or by emailing us: This email address is being protected from spambots. You need JavaScript enabled to view it. to have them included on our website.

Every second Thursday until the end of the year, we will be posting a Throw Back Thursday, or a ‪#‎TBT‬, on our Facebook: www.facebook.com/MNDVic and Twitter www.twitter.com/MNDVic with highlights of events, facts about the association, and stories that have happened over the last 35 years. Please like/follow us to stay up-to-date!

by Stefanie Kitsoukilias

2016 marks an extraordinary milestone for MND Victoria. In October the association will be turning 35 and to celebrate this, we are launching a special project celebrating our Social History.

We encourage everyone to get involved by sharing their own stories and pictures either on Facebook or by emailing us: This email address is being protected from spambots. You need JavaScript enabled to view it. to have them included on our website.

Every second Thursday until the end of the year, we will be posting a Throw Back Thursday, or a ‪#‎TBT‬, on our Facebook: www.facebook.com/MNDVic and Twitter www.twitter.com/MNDVic with highlights of events, facts about the association, and stories that have happened over the last 35 years. Please like/follow us to stay up-to-date!

Prior to 1981

1874 saw Charcot describe what is now known to be the most common form of MND, i.e. Amyotrophic Lateral Sclerosis (ALS).

Michelle and Nandi with others
Michelle and Nandi Kaszonyi, 1981

In 1950, Dr F Arran described the Progressive Muscular Atrophy form of MND.

Nandor ‘Nandi’ Kaszonyi was diagnosed with MND in the late 1970s. Due to lack of information available his wife, Michelle Kaszonyi, began visiting a drop in centre at Bethlehem Hospital, Caulfield. Information was forwarded to Michelle from the American ALS Association to better learn about the disease. She also kept her own exercise book with notes about the disease and the effects she had witnessed.

** Michelle recently wrote to us, From such small beginnings, after reading of our 35 year celebrations in MND News **

Yvonne Kelly, a nurse at Bethlehem Hospital, suggested forming a Motor Neurone society of their own to Nandi and Michelle after seeing the volume of information that the couple had received.

1981

The original Motor Neurone Society logo
Motor Neurone Society logo

The Motor Neurone Society was founded on 13th October 1981  by Michelle and Nandi Kaszonyi and others at a public meeting held at Bethlehem Hospital. Members of the new society included Nandi as President, Michelle as Secretary, and Michelle’s mother as Treasurer, Yvonne Kelly acted as Liaison Officer, and Gordon Tulberg as Vice-President.

A spare bedroom in a house belonging to Nandi and Michelle was used for preparing a regular newsletter and for administration work.

Nandi and Michelle placed letters in newspapers asking for anyone with the disease to contact them.

Telephone support supplies a listening ear to those living with MND or caring for someone with the disease about concerns or queries. A tool especially helpful for those isolated from the Association by distance or disability.

1982

Michelle Kaszonyi, Ian Coates with Eames Bishop in 1981
Michelle Kaszonyi and Ian Coates with Eames Bishop in 1981

Eames Bishop, President of the ALS Association in the USA, visits Australia in August 1982, bringing printed information about ALS and ALSA.

Michelle Kaszonyi and mother Muriel Whitney visit the USA in November.

1983

Marie Revill at the first equipment storeroom
The first Equipment storeroom

Assisted by Oakleigh Lions Club who generously provided a lease and two years rent, the society moves to a shop in Kangaroo Road, Oakleigh. This shop was small and so was mostly used a contact point for people living with MND. Due to size limitations, equipment was stored at a residential garage in Cheltenham. Volunteers made the journey between these two points regularly along with being responsible for distributing needed equipment.

Monthly meetings took place at the Recreation Hall at Caulfield General Medical Centre.

Registration as a Benevolent Society.

Lou Richards was appointed as the Society’s first Patron.

1984

Four volunteers packing cornflowers
Our wonderful volunteers!

Appointment of a part-time Community Nurse.

First seminar on MND held in cooperation with Bethlehem Hospital and MS Society.

Volunteers provided all services until the paid employment of a Coordinator of Volunteers was required.

1985

The Motor Neurone Society Vic sign at 518 Kooyong Rd, Caulfield South
518 Kooyong Rd, Caulfield South

Certificate of Incorporation and purchase of 518 Kooyong Road, South Caulfield, which was previously a private home.

Support groups initiated with the creation of North Central Support Group. Similar groups followed in Gippsland, Echuca, Birchip, and Shepparton.

1986

Bacchus Marsh tennis day fundraiser
Tennis day fundraiser, Bacchus Marsh

Moved to a house at 518 Kooyong Road, Caulfield South. The new house was called the Ian Coates Centre in honour of Ian Coates, a former VFL umpire, ex-president of the Society and person living with MND. Equipment was stored in a large garage and a bungalow on the property.

Appointment of First Executive Officer, Lois Donald. The society had enough funds to pay a salary for six months, but part of this role included Lois finding further funding for the ongoing role - she was told in her interview.

First Leigh Robinson Memorial Tennis Tournament took place in Bacchus Marsh.

1987

Warragul Jaycees produce the Etran Board.

1988

Lady at desk in office
The first office worker: Edna Farris

Appointment of part-time Secretary to help with general office work.

His Excellency the Governor of Victoria, Dr Davis McCaughty AC, became Patron in Chief.

1989

First MND Awareness Week and meeting Australian Motor Neurone Societies.

The Ian Coates Centre was officially opened by the Hon. Perter Spyker, Minister for Community Services Victoria.

Appointment of a part-time Nurse Educator.

1990

Attendance at MNDA UK Conference established information sharing links and options for support models.

1991

Crowd listening to Nina Buscombe at 10th birthday celebrations
10th Birthday – Nina Buscombe addresses the attendees

10th Birthday celebrations. Steering committee setup to form the MNS Association of Australia.

Freecall number appears on Medicare receipts inviting people to seek information about MND.

The first Town and Country Fete was held at the Ian Coates Centre by the Gippsland and Ian Coates Centre volunteers:

The first Town and Country Fete was held at the Ian Coates Centre. At the fetes there would be an assortment of preserves and jams, clothing, trash and treasure, and fresh fruit and vegetables. These fetes went on for many years, and so many lovely stories can be told about the times spent there.

“I can remember buying apple jelly one year and the next year going back and buying five jars of apple jelly because it was just so good. The fetes were about the coming together as people. They bound us to our local neighborhood, cause all the locals would drop in, but it also meant that people got together. A social occasion, a good cause, raise money; and I think that’s one of the things about this organisation. It is about the people, it’s not about anything else.”

– Rod Harris, CEO MND Victoria.

People viewing goods at the Town and Country Fete

Peter Cardy, Executive Director of MNDA UK, guest speaker at the 10th birthday celebrations. A steering committee to form the MND Association Victoria.

1992

Establishment of The International Alliance of ALS/MND Associations.

1993

People at art show
New CEO, Rod Harris at The Hut Art Show

The Motor Neurone Society becomes the Motor Neurone Disease Association of Victoria. Rod Harris appointed as Executive Officer.

Sir Gustav Nossal became the scientific Patron of the MND Association of Australia.

First National Research Seminar organised by MND Australia and the Walter and Eliza Hall Research Institute.

Members voted at the AGM to accept a change of name for the Society, which became the MND Association of Victoria.

1994

Group photograph
Judith Durham, Patron of MND Australia with the team at MND Victoria

Results of the first clinical trials of Riluzole as a treatment for MND published.

Judith Durham became a Patron of the MND Association of Australia on 10th December 1994.

On 1 December, Duchess of York met members and friends of MNDAV at Caulfield Town Hall in December. She didn’t leave until everyone had had their picture taken with her. Photographs taken were mailed back to England for her to sign and return to those in the pictures.

Duchess of York with Dr and Mrs Harry Jenkins
Duchess of York with Dr and Mrs Harry Jenkins

1995

Two people holding certificates in Cathedral
Mavis Gallienne & Peter Cardy (UK) at St James’ Old Cathedral

Mavis Gallienne elected Chairman International Alliance of ALS/MND Associations.

Swallowing Difficulties video was produced and launched by Rob Knowles.

Formal position of Coordinator of Volunteers was created.

Sach Report completed identifying the key needs of people living with MND in Victoria  and providing a foundation for the Association’s future services

1996

Lady sitting in chair
Nina Buscombe

The Nina Buscombe Award initiated to honour the contributions of Nina to the development of services for people living with MND.

About 800 loans of equipment were required this year, home visits were conducted twice a week for those in the metropolitan area, supplemented by telephone support by staff and volunteers.

Cherries auctions at the Melbourne Wholesale Fruit and Vegetable Market:

The first box of cherries to come into the Melbourne Wholesale Fruit and Vegetable Market is auctioned off every year and the proceeds go to a charity.

For a few years running, MND Victoria was the recipient of this generous donation from bidders hoping to do a good deed AND secure the best cherries of the season!

Members of the association and volunteers would arrive at the markets at 4am to watch the auction take place. A box of cherries would go for a few thousand dollars, which was of enormous assistance to the association. One year, the Duchess of York attended the event for a presentation.

The following picture of the cherry auction was taken in 1996:

Cherry auctions

1997

Gathering for the First Global Day Celebrations
First Global Day Celebrations

The first ALS/MND Global Awareness Day held on 21 June, the solstice.

1998

Double story terrace in Canterbury
The new office at 265 Canterbury Rd, Canterbury

Association relocates to new premises at 265 Canterbury Road, Canterbury in August. This becomes the focal point of MND activities in Victoria.

1999

Three people with bags of corks
One of the first cork collections

Speaking from Experience: Motor Neurone Disease video produced. The Rural Workers pilot project in Barwon Region.

The MND Care Foundation was established.

"Equipment – it’s a corker" recycling project commenced to collect and sell recycled cork.

2000

Two people in meeting
Living Well Program

First Living Well Program commences in March.

Drink Tea for MND hosted by June Solly.

2001

Lighting candles
Day of Hope and Remembrance, 2001 and March of MND Faces Banner

Launch of “Australia’s March of MND Faces” Banner by members and initiator Jackie Williams.

MND Week was launched with the first “Sale for Life” Day.

Cork collection started in addition to formal fundraising. 300,000 corks were needed to buy a wheelchair and this year saw the purchase of two new wheelchairs using this means of fundraising.

2002

Welcome to country
Opening of the 13th International Symposium on MND/ALS in Melbourne

Equipment Library computerised. MND Research Tissue Bank of Victoria becomes reality.

Australia hosted the International MND/ALS Conference in Melbourne.

2003

Young People’s Group established for people living with MND under the age of 50.

2004

People gathered at walk
Walk to D'feet MND, Carlton

Launch of the Australian Motor Neurone Disease Registry.

First Telelink Group Programs and Living on Group Program.

Rod Harris appointed as Chairperson of the International Alliance of ALS/MND Associations.

First Walk to D-Feet MND held at Princes Park, Melbourne raising $8,275 for research.

2005

Speaker and panel at conference
National MND Conference in Melbourne, 2005

First National MND Conference in Melbourne.

Deakin and Melbourne University in association with MNDAV began a three-year project looking at the economic impact on MND.

Bendigo celebrated 20 years of meetings in country Victoria.

2006

Group with framed cornflower field picture
Victorian Ladies Bowling Association

Received $118,500 donation from Victorian Ladies Bowling Association, which had chosen MND Victoria as their charity of the year.

MND Victoria celebrates 25 years.

2007

Volunteer Hairdressing service provided.

Age restriction for Rilutek lifted to include those diagnosed in the past five years.

2008

People enjoying dinner and dancing
Charity Ball for MND Victoria

Application made to the Department of Human Services for additional funding for Regional Advisors to reflect significant workload in the year following diagnosis.

First MND Ball.

2009

People providing foot massage
Massage training day

Use of CRISSP as client data management system introduced which is also used to support research on people with slower moving MND.

Massage training program held in Melbourne to provide assistance for those living with MND.

Anne Janssen nominated for Victorian Senior of the Year after joining as a volunteer in 1995. She also held other positions like contact for the North Central Region and facilitator for the Bendigo Support Group.

2010

People enjoying a celebration
Vitality partners with MND Victoria

In October, the Department of Human Services increased funding by $180,000 on a recurrent basis.

Refurbishment of MNDAV office in Canterbury Road.

Vitality Brands joined with MND Victoria to distribute grants of $500 to help MND suffers and their families with “Taking a Break”.

MNDV Volunteer newsletter introduced in February.

First Awareness Walk for MND held.

Started hosting Bunnings sausage sizzles annually in Hawthorn to raise money for MNDV

2011

Five women with medals
Gold Coast Marathon

144 new clients introduced this year to MNDAV.

Social media websites like Everyday Hero and My Cause makes fundraising easier for members of the public wishing to assist with the cause.

Trial of new drug dexpramipexole in Australia.

International Symposium on ALS/MND hosted in Sydney.

2012

Two girls in MND tshirts
Ashleigh Brewer from Neighbours

Walk from Melbourne to Wangaratta.

Staff members: 6 full time, 12 part time, and 121 registered volunteers.

Ashleigh Brewer, from ‘Neighbours’, appointed Junior Ambassador.

Charity Ball.

Cork collection discontinued. 103 manual wheelchairs were purchased to meet the needs of clients with cork collecting.

2013

The Deb Bailey MND Research Centre officially opened.

Biography service introduced

2014

In August, over 60,000 supporters donated more than $3 million to MND Australia and state MND associations through the Ice Bucket Challenge.  

2015

Melb2Mallee4MND took place with Tim and Matt challenging themselves to run/walk from Federation Square to Hopetoun which assisted with raising over $50,000.

Burger chain Grill’d in Melbourne’s QV has MNDAV as part of their Local Matters to raise funds for the association by tokens.