User:Noracrentiss/sandbox/MNDNXCT

Summary
The Motor Neurone Disease New Zealand Charitable Trust (MNDN) 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. The Motor Neurone Society of New Zealand Incorporated was subsequently established ed on 21 March1985.

In 2008, The Motor Neurone Disease Association of New Zealand (Incorporated) was registed as a Charitable Trust.CITATION

in 2022 The Motor Neurone Disease New Zealand Charitable Trust was registered as a charitable trust board.

Structure
MNDNZCT was originally a membership-based organisation whose members formed a national and series of local networks that provided information and support to people with MND and their families and supporters. In 2022, became a charitable trust governed by a Trust Board.

Both types of organisaion lobbied for improved services for people with the condition.

In 2023 the Board Chair was Lucy Haberfield and its chief executive was Scott Arrol.

Supporters
Patron: The late Sonja Davies MP was Patron from

Research
The Trust funds and promotes research to understand what causes MND, how to diagnose it and how to effectively treat it in order to reduce its significant impact. Key among its activties are:


 * Funding research
 * Coordinating research through conferences and symposia

Care and information

 * Providing information to patients and carers
 * Providing support through a network of branches and regional fieldworkers

Fundraising

 * Fundraising and income-generating activities - 2015 Ice bucket challenge - Seekers Farewell Tour,  -Carey Vivian Race against Time: https://planning.org.nz/Story?Action=View&Story_id=2706) - Walk to D’Feet 2016 https://wellington.scoop.co.nz/?p=92532

•	The association has  volunteer branches and groups across New Zealand that assist with fundraising activities

•	The association benefits from legacies and also tribute funds, which are left in the memory of people affected by the disease.

Awareness and campaigns
The Trust has a campaigns network that seeks to shape a better future for people with neurological conditions such as MND. It does this by:

•	Lobbying government

•	Raising awareness of the condition

•	 encouraging adoption of best practice such as the MND Charter and NICE guidelines for MND.

•	Undertaking awareness activities using media opportunities. 