Motor Neurone Disease New Zealand Charitable Trust

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.

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]

References

1. "Disease sufferer hopes to help others". North Shore Times Advertiser. 1 February 1985.
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

• Walker, Kerry L.; Rodrigues, Miriam J.; Watson, Beth; Reilly, Claire; Scotter, Emma L.; Brunton, Heather; Turnbull, Janet; Roxburgh, Richard H. (1 February 2019). "Establishment and 12-month progress of the New Zealand Motor Neurone Disease Registry". Journal of Clinical Neuroscience. 60: 7–11. doi:10.1016/J.JOCN.2018.11.034. PMID 30473407.

External links

Official website: www.mnda.org.nz