Motor Neurone Disease New Zealand Charitable Trust

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The Motor Neurone Disease New Zealand Charitable Trust (MNDNZ) is an organisation that focuses on improving access to care, research and campaigning for those people living with or affected by motor neurone disease (MND) in New Zealand. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's Disease. MNDNZ is the only national charity in New Zealand that promotes research into the disease and provides support for people affected by MND.

Contents

History

In 1985, an article was published in a suburban Auckland newspaper featuring Vera Grant and Ron Jacobs, both of whom had MND. Their goals were to establish a support network in New Zealand for people with MND as no such entity existed at the time. [1] The Motor Neurone Disease Society of New Zealand Incorporated was subsequently established on 21 March1985. The Society changed its name to the Motor Neurone Disease Association of New Zealand (Incorporated) in 1992. [2]

Supporters

The Association's first Patron was Dr Jonathon Simcock. [2] Former MP Sonja Davies was Patron from 1996 to 2005. [3] [4] Davies' daughter Penny was diagnosed with motor neurone disease in 1990 and died in 1994. [5] Former MP Ruth Dyson QSO became Patron in 2006.

In 2004, Jill Braddick was awarded a Queen's Service Medal for her services in helping to establish the organisation. [6] [7]

Activities

Research

In 2015, MNDNZ funded a research project led by New Zealander, Dr Gareth Miles, using stem cells grown from patient skin samples. [8]

The New Zealand Motor Neuron (sic) Disease Research Network was created in 2017, part-funded by MNDNZ, to facilitate the interaction between MND biomedical and clinical researchers, allied health professionals, and other researchers whose work is expected to have a beneficial impact on those with MND in New Zealand. [9]

In 2019, MNDNZ contributed funds for research at the Centre for Brain Research at the University of Auckland in support of a genetics study led by Dr. Emma Scotter. The nationwide genetics study seeks to determine whether the high rates of MND in New Zealand are related to unique genetic factors in New Zealanders. [10]

Care and information

MNDNZ provides information and support for patients and their carers through a network of local community groups and regional fieldworkers.

Fundraising

Fundraising and income-generating activities include an annual ice bucket challenge first held in 2015 in the USA. The challenge raised $35,000 in 2016. [11] In 2016 and in several years subsequently, MNDNZ promoted Walk to D’Feet as a fundraising sponsored walk. [12]

Awareness raising

MNDNZ promotes the Ice Bucket Challenge and "Cuppa Tea for MND" annually in June to align broadly with Global MND Awareness Day of 21 June. [13]

On 6 September 2021 in the Viaduct Basin, Auckland, Emirates Team New Zealand launched its mono-hull racing boat Te Aihe for the 36th America’s Cup race. The early morning ceremony was attended by New Zealand's former Prime Minister Jacinda Ardern and others at which Marcus Gerbich, a member of the MNDNZ, officially named the boat. MNDNZ was Emirates Team New Zealand’s official charity at the time. [14]

Related Research Articles

<span class="mw-page-title-main">Motor neuron diseases</span> Group of neurological disorders affecting motor neurons

Motor neuron diseases or motor neurone diseases (MNDs) are a group of rare neurodegenerative disorders that selectively affect motor neurons, the cells which control voluntary muscles of the body. They include amyotrophic lateral sclerosis (ALS), progressive bulbar palsy (PBP), pseudobulbar palsy, progressive muscular atrophy (PMA), primary lateral sclerosis (PLS), spinal muscular atrophy (SMA) and monomelic amyotrophy (MMA), as well as some rarer variants resembling ALS.

<span class="mw-page-title-main">Stephen Twigg</span> British Labour Co-op politician

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George Wilson "Doddie" Weir was a Scottish rugby union player who played as a lock. He made 61 international appearances for the Scotland national team and represented the British & Irish Lions.

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Krzysztof Nowak was a Polish football player, best known for his stint with the VfL Wolfsburg team.

<span class="mw-page-title-main">Progressive muscular atrophy</span> Medical condition

Progressive muscular atrophy (PMA), also called Duchenne–Aran disease and Duchenne–Aran muscular atrophy, is a disorder characterised by the degeneration of lower motor neurons, resulting in generalised, progressive loss of muscle function.

<span class="mw-page-title-main">Motor Neurone Disease Association</span>

The Motor Neurone Disease Association focuses on improving access to care, research and campaigning for those people living with or affected by motor neurone disease (MND) in England, Wales and Northern Ireland. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's disease.

<span class="mw-page-title-main">Rob Burrow</span> Great Britain and England international rugby league footballer

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Anna Leese is a New Zealand born soprano opera singer.

David James Hagen was a Scottish professional footballer.

<span class="mw-page-title-main">ALS</span> Rare neurodegenerative disease

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a rare neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most common form of the motor neuron diseases. Early symptoms of ALS include stiff muscles, muscle twitches, gradual increasing weakness, and muscle wasting. Limb-onset ALS begins with weakness in the arms or legs, while bulbar-onset ALS begins with difficulty in speaking or swallowing. Around half of people with ALS develop at least mild difficulties with thinking and behavior, and about 15% develop frontotemporal dementia. Motor neuron loss continues until the abilities to eat, speak, move, or, lastly, breathe are lost.

<span class="mw-page-title-main">Ice Bucket Challenge</span> 2014 viral internet meme and fundraiser

The Ice Bucket Challenge, sometimes called the ALS Ice Bucket Challenge, is an activity involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of the disease amyotrophic lateral sclerosis and encourage donations to research. The challenge was co-founded by Pat Quinn and Pete Frates; it went viral on social media during July–August 2014. In the United States, many people participated for the ALS Association, and in the United Kingdom, many people participated for the Motor Neurone Disease Association, although some individuals opted to donate their money from the Ice Bucket Challenge to other organizations.

The Euan MacDonald Centre is a research centre which is part of the University of Edinburgh. The centre was established in 2007 and seeks to improve the lives of patients with motor neurone disease (MND). The centre was part funded by a donation by Euan MacDonald, who was diagnosed with MND in 2003, and his father Donald MacDonald. In addition to conducting research, the centre also offers clinical treatments. Around 130 are diagnosed with MND each year in Scotland alone.

<span class="mw-page-title-main">Gordon Aikman</span>

Gordon Lewis Aikman BEM was a British political researcher and campaigner. He was Director of Research for the Better Together campaign during the Scottish Independence Referendum. During that campaign he was diagnosed with motor neurone disease. Aikman successfully lobbied the Scottish Government to double the number of MND nurses in Scotland, and to fund them via the NHS. He also raised more than £500,000 for medical research.

<span class="mw-page-title-main">Euan MacDonald</span> Scottish entrepreneur (born 1974)

Euan MacDonald MBE is a Scottish entrepreneur. He studied at the University of St Andrews and the University of Edinburgh. MacDonald was diagnosed with Motor Neurone Disease (MND) in October 2003.

Justin John Yerbury was an Australian molecular biologist who was spurred to follow a career in biological research when he discovered his family has the genetic form of motor neurone disease (MND). He held the position of Professor in Neurodegenerative Disease at the University of Wollongong. He was diagnosed with MND himself in 2016, but continued to research until his death from the disease in 2023.

Catherine Abbott, Lady Bird is a professor of molecular genetics at the University of Edinburgh.

Gilles J. Guillemin is an Australian neuroscientist. He received the Ordre national du Mérite in 2019 in recognition of his work in medical research. He was awarded a Member of the Order of Australia in 2021.

Sarah Ezekiel is an artist. She has ALS and uses technology to control a computer cursor and create her images.

Martin Lynch was a Northern Irish athlete, Gaelic footballer and association footballer. At club level he played with Newry Mitchels and Newry Bosco, and also lined out at inter-county level with various Down teams.

References

  1. ↑ "Disease sufferer hopes to help others". North Shore Times Advertiser. 1 February 1985.
  2. 1 2 Roxburgh, John (1995). Ten years on : a brief history of the Motor Neurone Disease Association of New Zealand. National Library of New Zealand: Motor Neurone Disease Association of New Zealand.
  3. ↑ Watkins, Tracy (13 June 2005). "Political life not all roses for pioneering Davies". The Press. A5 – via Proquest.
  4. ↑ "Sonja Davies, ONZ 1923-2005 Patron: MND Association of NZ 1996-2005". Newsletter of the Motor Neurone Disease Association of New Zealand (1/2005): 1. July 2005. ISSN   1174-6181.
  5. ↑ Else, Anne (30 May 2023). "'Davies, Sonja Margaret Loveday - Biography'". Te Ara: Dictionary of New Zealad Biography. Retrieved 30 May 2023.
  6. ↑ Pickering, Sid (23 March 2004). "Medal for motor neurone sufferer". Waikato Times. p. 2. Retrieved 4 June 2023– via ProQuest.
  7. ↑ "New Year's Honour List 2004". dpmc.govt.nz. 31 December 2004. Retrieved 4 June 2023.
  8. ↑ Thompson, Wayne (17 January 2015). "NZ scientist using skin cells to study killer illness". New Zealand Herald. Retrieved 4 June 2023.
  9. ↑ "Motor Neuron Disease Research Network". 30 May 2023. Retrieved 30 May 2023.
  10. ↑ "The heart and soul of brain research". 20 April 2022. Retrieved 2 June 2023.
  11. ↑ Catherall, Sarah (28 July 2016). "Ice bucket challenge credited with a medical breakthrough". Stuff. Retrieved 9 June 2023.
  12. ↑ "Walk 2'D Feet Motor Neurone Disease to hit the streets of NZ". SportsHub. 15 September 2016. Retrieved 30 May 2023.
  13. ↑ "Global day". International Alliance of ALS/MND Associations. 30 May 2023. Retrieved 30 May 2023.
  14. ↑ Korotaeva, Maria (6 September 2019). "New Zealand Team unveil first mono-hull racing boat for the America's Cup 2021". Charter World. Retrieved 30 May 2023.

Further reading

Official website: www.mnda.org.nz

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