Introducing the Inaugural MND New Zealand Research Conference - Monday 9th December 2019 in Auckland
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Introducing the Inaugural MND New Zealand Research Conference - Monday 9th December 2019 in Auckland
MND New Zealand supports people living with motor neurone disease, their carers, families and whanau to enable them to have the best quality of life possible. We help people with MND access the full range of medical expertise and equipment they need, and we provide practical, emotional and social support. We advocate for, educate and provide up-to-date information for people with MND and their whanau as well as the health professionals working with them. MND New Zealand has a small National Office based in Auckland and eight Support Team Members located nationwide.
The MND Association of New Zealand was founded in 1985 by a group of very determined volunteers who had family or friends battle this relentless disease. We are the only national organisation in New Zealand focused on MND care & support, research and campaigning. We are an incorporated society with charitable status and are governed by the MND New Zealand National Council.
We are an Associate Member of MND Australia and we are a member of the International Alliance of ALS/MND Associations , FINZ , the Neurological Alliance of New Zealand and the NZ Carers Alliance.
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MND New Zealand supports people living with motor neurone disease, their carers, families and whanau, and the health professionals who work with them throughout New Zealand.
Our Vision - Together we provide the best quality support for those living with MND
Our Values - People first, Supportive, Professional, Honesty, Partnership
We,
Please click here to download the The Motor Neurone Disease Association of New Zealand (Incorporated) - Amended Constitution - November 2018 (PDF).
Lucy Haberfield – Chairperson - I am an experienced Corporate Support Manager with a background in Finance. I have been a Chartered Accountant since 1995 and also hold a marketing diploma. I have a particular interest in strategic and business planning. I am a keen trail runner and multi-sporter, having completed the Captain Cooks Challenge on the Queen Charlotte Track. I am married with three adult children and a daughter-in-law. My husband and I live in Greytown and I commute daily to Wellington. My history with MND is that my father passed away as a result of MND in 1999. I’m keen to give something back to my community and I feel MND is a good fit.
Anna Chalmers - Vice-Chairperson – After my father died of MND I wanted to do something to help raise awareness of the disease. My background is in media, having worked as a journalist until 2011 and now in health sector communications. I started by generating publicity around MND Global Awareness Day and have since worked to support the public's understanding of MND. I believe we benefit by bringing our community together, so one of my highlights has been the launch of our successful Facebook page, through which we have built a strong community. Together, I believe, we can bring about positive change and one day help find a cure for this disease.
Greg Horton - Treasurer/Secretary - I am a family man and have been married to Shelley for 15 years. We have three children. I am 48. I was diagnosed with MND/PLS a little over two years ago, and it is an honour to contribute to the governance of the Association. I hold degrees in Commerce and Law (Honours) from the University of Auckland. I am a founding partner of the law firm Harmos Horton Lusk, and have practiced law for over 20 years in Auckland, Wellington and New York. I am a Chartered Member of the Institute of Directors, Chair of New Zealand Funds Management and New Ground Capital and a Director of Fulton Hogan, Viaduct Harbour Holdings, Wairakei Pastoral and Team New Zealand. Despite my condition, I am lucky to be able to still work full time.
Beth Watson – I came to the Association in 2001 as the National Executive Officer, a post I held for just over 3 years. Since then I have been part of the Wellington committee and, from October 2007, a National Council member. I enjoy using my understanding of MND, learned from many people over the years, and my knowledge of the Association to help people with MND and their families receive the best support possible. I’m inspired by the determination, courage and resourcefulness of people living with MND and the dedication and care of the fieldwork team.
Fiona Hewerdine - I qualified from Edinburgh University with a degree in Speech and Language Therapy. Working in the UK, I developed a great interest in the management of MND and completed my Masters in Health Science with a focus on MND. I have done Level I and II for Advance Care Planning and represent the District Health Board on the Advisory Panel for Future Care Planning. I have been a speaker at numerous MND events from local to national. I’m the Executive Advisor for Degenerative Neurological Conditions and Palliative Care for the New Zealand Speech and Language Therapy Association. I hope to positively affect the ongoing development of care for people with MND in New Zealand.
Tony Treloar – Wanting to help, including suggesting ideas and implementing any that are well-received, was my motivation for joining Council. Marketing and self-employment are my background. Starting up, running, then selling small businesses at their peak was my employment for over two decades, in various industries: garden centre, office furniture showroom, real estate agencies, print factory, etc. MND is now also on my CV. Perhaps not quite a royal flush, if life is a pack of cards, yet every minute I can smile and enjoy life feels like a small win over the disease.
Steve Green - I spent some time as full-time carer for my youngest brother Mark who had MND. This had a profound effect on my life. As Mark’s brother I felt his struggle keenly, and at age 62 I bring to MND New Zealand my desire to “put back in” to this life I’ve been fortunate to have. The highlight of my working life was being National Sales Manager for Sony Computer Entertainment and launching PlayStation. I am a painter and decorator by trade and this allowed me to travel and work throughout the world. These days I run a small business of my own and my spare time is taken up with acting and theatre. I have appeared in many shows and occasionally you may see me on Shortland Street or in a Netflix movie.
Jodie O'Doherty - I have been involved in fundraising and helping charities since I was a child. By the time I was 20, I was organising gala balls to raise money for various causes. Before I had children I was working in Business Processes and later as an Executive Assistant. These roles have taught me that I love coming up with new ideas, I can make anything happen. I have an eye for finding a more streamlined approach to any task or process. Since my mum was diagnosed with MND, I have become more involved with MND NZ, arranging several events in Wellington. I am thrilled to be part of the Council and hope to use my knack of developing partnerships and connecting people to further develop the organisation. Originally from Sydney, I have lived in Wellington with my husband and three young children for five years.
Click here to read the full Annual Report 2017-18 MND New Zealand (PDF).
Click here to read the full 2016-2017 Annual Report (PDF).
Click here to read the full 2015-2016 Annual Report (PDF).
Click here to read the 2014-2015 Annual Report (PDF).
The strategic intentions of MND New Zealand are outlined below. The full strategy document can be downloaded here MND New Zealand Strategy 2019-2022 (PDF).
The MND Association of New Zealand was founded 30 years ago in 1985 by a group of volunteers with experience of caring for someone with MND.
All over the world, support organisations for MND only began in the late 1970s. In the early times, individuals had to “make it happen” themselves even more so than today.
In 1978 Wym van Erpers Roijaards, who had MND, set up the Technical Aid Trust based at Hutt Hospital to lend computers with “talking” technology – at that time it cost around $20,000 to buy just 4 sets of software with just 2000 words in its word bank.
In 1982 Jill Braddick in Northland had to travel to Australia and America to meet others living with MND; in 1984 Vera Grant in Auckland had to contact MND Victoria, Australia, to find out about Jill.
In 1984 Lois Chambers was one of several in Wellington who made her friends start a group before she died (“or else I will come back and haunt you”). She died one week after their first meeting in August 1986.
In Christchurch in November 1988 Philippa Shepherd, who had lost her mother to MND, initiated an inaugural meeting supported by Graham East, whose wife had familial MND. Thirty-three people attended that meeting and were addressed by Dorothy Nicholas from Auckland – Dorothy had lost her husband to MND before the “Society” formed. For around 15 years Dorothy combined the roles of vice-president, inspiration and roving Support Worker up and down New Zealand.
The Society, as it was then, started in Auckland – and it was not without a struggle. It cost money to incorporate, it cost much voluntary time to attend meetings, to write newsletters, to cross “t’s” and dot “i’s” to “get the show on the road”. But a solid core of dedicated people (and their “volunteered” husbands, wives, children, neighbours and friends) ensured it happened. Wellington was a branch (1986), then Northland (1987 perhaps) then Christchurch (1988), then Bay of Plenty (around 1999) and Waikato around 2002.
Over the years the way we have done our business has changed. We have moved from volunteer visiting, through volunteer Support Workers, to paid Support Workers employed by branches to paid Support Workers employed and managed through our National Office.
The one constant seems to have been that we have always had loyal, dedicated, compassionate and caring people offering support services, whether paid or unpaid.
Although many people have served MND NZ faithfully over the years, we record here the Association’s roll of honour: people who have been awarded life membership or received an honour for their service.
From Canterbury – Graham East (1999)
From Wellington – Jack Telfer, Nedra Shand (both 1999), Robina Davies (2006),Geoff Thompson (2015), Reima Casey (2016)
From Waikato – Mary Parker (2009), Helen Palmer (2017)
From Bay of Plenty – Michelle Knox (2014)
From Auckland – John Roxburgh, Dennis Hall (both 1999) Dorothy Nicholas QSO (1996)
From Northland – Edith McCarthy (2001), Jill Braddick QSM (2004)
In 1987, after not being able to complete a championship round of golf, my mother was diagnosed with Motor Neurone Disease. For her last year in 1990 she and my father came to live with me and my two young children. They were enriched by the many MND Association personalities they met, as my involvement widened.
We looked forward to seeing Jill Braddick (awarded a QSM for services to MND in 2004) and Roly Griffiths, from the Northland Branch who drove all the way down to Karori in their campervan and parked at our front door for National meetings.
That year I joined the Wellington Branch committee where the focus was on making it easy for people to get together. Regular meetings at the Puketiro Centre provided a place to chat and learn more about living with MND.
The people who poured the tea and prepared lunch, themselves had lots of experience of their own family or friends having had MND. At one Christmas gathering, Melville Tavita, 24, walked unsteadily across the room to join young friends in the Pacific Church Choir singing to us. We all sang Silent Night. The shared support and friendship that arose from such times together deepened our bonds.
Visiting folk at home was what a lot of effort was put into, both in the Wellington region and beyond - Blenheim, Nelson, Murchison, Hokitika, Mangaweka, Woodville and the Hawkes Bay.
Weekend visits to Hastings and Napier people continued for some years. A carload of members travelled north and split up in the Hawkes Bay. At the end of the day we would be in awe of how people coped with MND - their creative solutions to problems often appearing in the next Branch Newsletter.
Later, with the help of the Domiciliary Nursing Trust, we developed a home visitor role. The Branch committee found the responsibility of becoming an employer a little daunting, so initially paid the Trust to provide the visitor. In time the National Office would supply employer experience to overcome this. Soon a fieldworker role was to emerge.
A six-weekly Newsletter was prepared and posted to families, some health professionals and other support groups so that we shared ideas and meeting information.
Support took a variety of forms, for example writing letters, pruning roses, delivering meals, talking on the phone, even finding a pair of stretch denim jeans for one man, and lobbying for a quicker response to equipment needs or a bathroom alteration.
In 1996 along with Christine McKenna, I helped establish a separate National Office for the MND Association of NZ. Until then the Auckland Branch had also operated as the National Office.
This office was up the road from Parliament (handy for lobbying) next to good neighbours, the Multiple Sclerosis Society. Mary Newman became Executive Officer.
My hope was that the National Office would support and unify existing branches in a variety of ways - Auckland with its huge population, Wellington with its large geographical area (then Hawkes Bay to Hokitika), Northland, Christchurch, Hamilton and nurture new groups such as in the Bay of Plenty. The National Office needed to develop new policy in order to be representative of all our New Zealand groups. A small Executive met with Branch representatives to consider developments such as the fieldworker service and the production of information and promotional material responding to NZ needs. We standardised employment conditions for the emerging fieldwork service and opportunities for fieldworkers to meet and develop their knowledge and skills evolved.
Some highlights: Collecting after the Seekers concerts; goodwill and liaison with Australian groups; agreeing to use the blue cornflower logo and June 21st as a focus day; establishing a network of neurological organisations to share experiences; hospice liaison (boosted by Max Cavit, later an MND Association President);
Palliative Medicine 1998 Vol 12; publication of MND Association of NZ supported research; Saatchi & Saatchi volunteering to develop the first website in 2001, thanks to an introduction from Geoff Thompson, our Honorary Solicitor for many years.
Many people invigorated the Association. Geoffrey Perfect (Rotorua) who felt strongly that delay in making the diagnosis of MND disadvantaged people, funded the purchase of copies of a newly published text on MND to be given to the NZ Medical School Libraries.
Funding, in memory of Joyce Perfect, ensured the Association was a platinum sponsor of the NZ National Dysphagia Symposium in Hamilton 2000. The enthusiasm of speech language therapists Rosemary Hargreaves (Christchurch), Fiona Hewerdine (Tauranga) and Marg Foulsom (Melbourne) was so encouraging.
I was awarded Life Membership of the MND Association of NZ in 2004.
Living in Sydney in 1984 I received the news that my father had been diagnosed with motor neurone disease. A visit to my local doctor provided me with the news that he might only see a few cases in his professional lifetime and so began the search for information that all families face when this disease strikes. In 1985 we returned to NZ to help with my father’s support given the prognosis of 2 or 3 years to live.
My parents were part of the original Motor Neurone Society monthly meetings in Auckland and I became president for several years in the late 1980s. These were challenging years as we tried to establish a network of branches across the country, encourage people to become support contacts, get word out to doctors and neurologists that we existed, transition to a national and regional structure, and produce regular newsletters. And all of this on very limited funds with one part time paid secretary and everyone else volunteers.
However, we were driven by the experiences of people coming to us in search of knowledge having just been diagnosed and offered limited advice by the medical fraternity. Meetings and home contact were the essence of our existence in sharing information, ideas, aids and equipment to show sufferers that they were not alone.
As an accountant I continued to compile the financial statements for many years and in July 1995 was made a Life Member. Whilst no longer MND active it was a privilege to work with the many dedicated people and I await the day when a cure arrives.
Mary began her involvement with MND when, as Hospice volunteer, she looked after a man with MND while his wife had time out. His wife later became a voluntary fieldworker in the Waikato area. In 1998 when that good lady moved away, Mary took on the volunteer fieldworker role. Her nursing background coupled with compassionate and caring nature meant that with loving care she looked after people with MND in this volunteer role until her resignation is September 2004. At that time the Waikato Branch employed a part-time paid fieldworker.
Until 2002, the Waikato area had been supported through the Auckland Branch of the Association. In April 2002, with support and help from the Auckland committee (particularly Nessie Sweetman and Alan Malcolm), Mary was instrumental in setting up a Waikato MND Support Group. Later that year Mary became its first president and subsequently Waikato was given Branch status by the National Council of the Association. The Branch was small to begin with but under Mary’s leadership, and supported by a small group of her loyal and caring friends, the Branch grew until there was an average of 20 people attending the monthly meetings.
When Waikato became a Branch Mary was the Branch delegate on National Council until she relinquished the role to Meynell Murray around 2003. Mary was greatly respected for her extensive knowledge and understanding of the needs of people with MND and the supportive and positive way she contributed her ideas.
Mary and her husband Bill contributed much to the Association over many years not only with their time delivering equipment and the countless volunteer hours of Mary’s providing fieldwork support, but they also always supported fundraising efforts and also worked on the committee of the Waikato Branch.
I joined MND NZ almost from the beginning when it was inaugurated as the Motor Neurone Society in 1982.
Colin Meade, who drew up the Constitution, asked me to produce a publicity newsletter. I had just retired as MRO for Middlemore Hospital. By default - I had a Mac SE, one of the first computers at the time, and I could type – I managed to publish the newsletter for nearly ten years. Much to my family’s disdain, I covered the lounge floor and dining table with material every few weeks for at least a fortnight for cutting and editing.
The 22-page editions had a blue cover and were printed for a very low price as money was very rationed. Between Dorothy Nicholas, Dennis Hall, Nessie Sweetman and myself, we managed to include columns for patients, carers corner, latest research, field workers, regional notes, etc and of course humour!
Michelle's father and uncle passed away from MND around 1998 and her sister was diagnosed with MND in 2004. The BOP Branch of MND supported the family by supplying an electric Lazyboy chair, and when Michelle's sister passed away in 2005 she decided to join the BOP Branch of MND in 2005 to help the Association.
Michelle was elected as a council member in 2006 and was the Vice President during 2007 and 2008. She was elected as Treasurer in 2008.
In September 2013 Michelle was diagnosed with MND. She continued to be involved with MND Association during this tough time. "It has been my privilege and pleasure to work with MND over this time and I’m sure I’ll still be involved for as long as I’m able," she said.
Michelle was awarded Life Membership at our 2014 AGM in Christchurch. Unfortunately she was unable to attend the meeting. In her citation we said: “It has been under her watchful eye and careful management and control that the Association has grown to enjoy a real degree of financial stability. Council also benefits from the considered views Michelle offers in all discussions. We also appreciate her calm and positive approach, her big warm smile and her genuine caring. Michelle, your contribution to the Association is awesome.”
Sadly Michelle passed away in September 2016.
My interest in MND started when my husband Ron Hughes was diagnosed in 1985. We attended the first AGM of the Auckland Branch and went on the committee. I have been a member off and on since then. Ron died in 1987.
My interest was awakened again in 1991 after helping nurse another person with MND. On the prompting of Jill Braddick and Lee Hewetson we started a Northland Branch in 1991. I became the voluntary Support Worker and Chair of this group, something that became my way of life for 17 years.
During this time I was a member of the National Council for about 10 years, being National President for 4.5 years. I was humbled by being awarded a Life Membership in 2001.
Northland was honoured to have members Jill Braddick and Lee Hewetson who were so inspirational to so many others. It was Jill who put me forward for Life Membership. Jill was awarded a QSM in 2004 for her community service to people with MND.
I was President of the Wellington Branch of the MND Association from 1984 to 2000.
Life presents many challenges and some of we luckier ones face less than others. For those with MND, their families, friends and carers their challenges are immense.
When my friend was diagnosed in 1984, I and everyone I knew had no idea what it was. Even looking up medical books told us very little. All we understood was that it was a neurological disorder without a known cause or cure.
Due to the lack of knowledge regarding this condition and no evidence of a support group in Wellington at that time, we, the friends of Lois Chambers, banded together to set wheels in motion. Lois located the Auckland MND Support Group and seeing the help provided there she insisted that we, her friends and colleagues, along with some health professionals, form a group. This came to fruition in 1984, the first meeting being held on 16th August, at Kimi Ora School, in Porirua.
From very humble beginnings without any funding, it became a strong and knowledgeable support group. All proceeds from grants and fundraisers were used to provide help for those with MND, in the means of monthly meetings, newsletters, buying items of equipment for loan, home visiting, enlisting help and advice from health professionals, the publication and printing of booklets on MND and much more.
The meetings and home visits enabled MND people to share their problems, experiences and frustrations and many obstacles were discussed and solutions found.
After 14 years of active participation in the group I, along with Jack Telfer (long-acting treasurer) were given the honour of Life Membership, presented to us by the then Patron (the late) Sonja Davies.
MND and its challenges had become a passion with me, and gave me a totally different outlook on life, and I hope I have become a more compassionate person with greater understanding of hardships endured by those less fortunate than myself.
Being a member of the Wellington MND support group was one of the most rewarding chapters of my life.
I have been honoured with election to Life Membership of the Association following my retirement from legal practice in Wellington. I had enjoyed acting as Honorary Solicitor for the Association for over 15 years.
I was introduced to MND NZ through my wife Jan’s membership of the National Executive for around eight years. We met many fine people contributing to the work of the Association, then with its Headquarters in Wellington. Their efforts channelled the immense amount of work done by volunteers and dedicated carers, and saw the Association through some tight financial times.
The Association benefitted from bequests, some of which were challenged, but the MND Association successfully defended the challenges and a sound financial base was established. Working with Beth, Michelle, Secretary Bruce and many others meant that a formidable team was assembled when needed.
I look forward to continuing contact and opportunities to support the Association’s work.
Reima Casey was our MND Association fieldworker in the Manawatu for 21 years, the first 10 years of which were done voluntarily. Reima always delivered a professional and highly respected service. Her sensitivity, understanding and knowledge were highly respected, gained through many years of experience in MND care. Sadly some of this experience came from her personal life, when her eldest sister died due to MND.
Within MND New Zealand, Reima was valued for her knowledge of MND and for her considered, considerate and wise counsel. She provided caring support to many families over the years. (As an historic aside, until around 2002 Branches were responsible for the service delivery in their area.)
Helen Palmer, who has a nursing background, was very aware of the challenges that MND presents when she became involved with MND New Zealand. Her service to the MND Association began locally with the Waikato Branch around 2003 and she continued that work until 2017, serving much of the time as local chairperson.
In 2006 she was elected to National Council and from 2008-2012 she very ably led the Association and melded Council into a strong harmonious team. She continued to serve as a Councillor until her retirement in 2017. Helen has been a stalwart for MND New Zealand and the Association has benefited tremendously from her extensive knowledge of the Association at both Branch and National level.
The David Oliver Beacon Award is an annual award that honours, acknowledges and celebrates those who work with people with MND. It is open to individuals, groups and services that provide a positive contribution, improvement or innovation in MND support or care. Each year a different theme is selected.
Dr David Oliver, internationally acclaimed physician has dedicated much of his life to enhancing the quality of life of people with MND through his practice, his writing and his teaching, generously agreed to his name to be associated with this award.
The theme for 2019 is: Acknowledging an individual or team making a difference on the journey of people or families living with motor neurone disease.
You may have a neurologist who’s been professional and caring when making your diagnosis, offering you helpful information or a referral. Perhaps a nurse or nursing team you see is taking some extra time or interest in helping you and/or your family along the way? Does your physio therapist, rehabilitation or hospice team go the extra mile to make sure you are well cared or perhaps your family has had extra support, which has made all the difference?
It could be an innovation within the science or health care community which is making a real difference for people with MND. Maybe you want to nominate your team or have someone nominate you for all the positive work you are doing for people living with MND – we encourage you to do so.
If someone comes to mind, then don’t be shy, please nominate them. You can renominate each year. To make a nomination, simply complete the nomination form via the link below. Nominations close on 31 August 2019. We look forward to hearing from you.
The 2018 David Oliver Beacon Award was the New Zealand MND Registry. The theme was 'Working as a team'.
The New Zealand MND registry team comprises of Dr Richard Roxburgh, Miriam Rodrigues and the Curator Kerry Walker.
The 2017 David Oliver Beacon Award was TalkLink Trust. The theme was 'A Shining Light in MND Care'.
The TalkLink Trust has been well respected in the MND community for many years for the understanding the therapists have of the needs of people with MND and their commitment to helping.
The 2016 David Oliver Beacon Award winner was Karen Thomas, the neurology nurse specialist based at Waikato Hospital. The theme was 'Leading for Change'.
Karen considers the needs of MND patients to be important and urgent, and goes the extra mile to ensure they are met. She analyses situations then suggests ways to hasten assessments and interventions that enhance quality of life. Thank you, Karen, for your work with people with MND.
