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.
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!
1874 saw Charcot describe what is now known to be the most common form of MND, i.e. Amyotrophic Lateral Sclerosis (ALS).
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.
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.
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.
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.
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.
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.
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.
Warragul Jaycees produce the Etran Board.
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.
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.
Attendance at MNDA UK Conference established information sharing links and options for support models.
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.
Peter Cardy, Executive Director of MNDA UK, guest speaker at the 10th birthday celebrations. A steering committee to form the MND Association Victoria.
Establishment of The International Alliance of ALS/MND Associations.
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.
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.
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
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:
The first ALS/MND Global Awareness Day held on 21 June, the solstice.
Association relocates to new premises at 265 Canterbury Road, Canterbury in August. This becomes the focal point of MND activities in Victoria.
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.
First Living Well Program commences in March.
Drink Tea for MND hosted by June Solly.
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.
Equipment Library computerised. MND Research Tissue Bank of Victoria becomes reality.
Australia hosted the International MND/ALS Conference in Melbourne.
Young People’s Group established for people living with MND under the age of 50.
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.
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.
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.
Volunteer Hairdressing service provided.
Age restriction for Rilutek lifted to include those diagnosed in the past five years.
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.
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.
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
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.
Walk from Melbourne to Wangaratta.
Staff members: 6 full time, 12 part time, and 121 registered volunteers.
Ashleigh Brewer, from ‘Neighbours’, appointed Junior Ambassador.
Cork collection discontinued. 103 manual wheelchairs were purchased to meet the needs of clients with cork collecting.
The Deb Bailey MND Research Centre officially opened.
Biography service introduced
In August, over 60,000 supporters donated more than $3 million to MND Australia and state MND associations through the Ice Bucket Challenge.
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.