User:Noracrentiss/sandbox/MND NZ

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. MNDNZ is the only national charity in New Zealand that promotes research into the disease and provides support for people affected by MND. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's Disease.

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. 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. It was originally constituted as a membership-based organisation with local branches which provided information and support to people with MND and their families. In 2021, following the decline in the number of active branches, the Association undertook an internal review of its governance stucture and decided to move away from a member based organisation. The Motor Neurone Disease New Zealand Charitable Trust (MNDNZ) was registered as a charitable trust in June 2022. In 2023 the Board Chairperson was Lucyna Haberfield and its chief executive was Scott Arrol.

Supporters
The Association's first Patron was Dr Jonathon Simcock. Former MP Sonja Davies was Patron from 1996 to 2004. Davies' daughter Penny was diagnosed with motor neurone disease in 1990 and died in 1994. Former MP Ruth Dyson QSO became Patron in 2006.

In 2004, Jill Braddick was awarded a Queen's Service Meda l for her services in helping to establish the organisation.

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

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.

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.

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. In 2016 and in several years subsequently, MNDNZ promoted Walk to D’Feet as a fundraising sponsored walk.

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.

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.