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Merry Christmas and Happy New Year


Merry Christmas and Happy New Year golfers. At this time we thought it timely to update golfers on the battle for a cure for MND - wishing all a very happy festive season - whatever your circumstances are!


Below an update from the Motor Neuron Disease New Zealand and an impact report from the Brain Centre of NZ.

At Motor Neurone Disease New Zealand, our greatest strength is our community – and you are an incredibly important part of that. Thank you for the support you have shown us in 2024.  

 

Over the last year, 129 people have received the devastating diagnosis that they have motor neurone disease (MND). Each of them, along with their loved ones, must navigate this difficult and complex journey.

 

Thankfully, our MND support advisors are there to support them, with personal and compassionate support during this difficult time.  

 

MND NZ’s team of eight community-based support advisors are now providing practical support and advocacy to over 460 Kiwis and their families across the country, at no cost to the person.

 

In this amazing country, we expect high-quality healthcare. Unfortunately, for many marginalised members of society, this expectation isn’t being met. This is especially true for people living with MND. 

 

That is because MND is a disease unlike any other – often progressing rapidly but predictably.  This places unique demands on support services, and often requires fast and adaptive responses that in many cases the health system is not set up to deliver. 

 

Policy frameworks often fail to address the specific needs of the MND community, creating delays and unacceptable challenges in accessing housing modifications, essential equipment, individualised funding, direct care and support, and other critical support systems. 

 

There is a growing, urgent need for a tailored approach. But it’s impossible to achieve this alone. 

Some stat's

  • 460 families supported, including 129 newly diagnosed

  • 15 awareness and educational talks given

  • 8,720 hours of community-based support provided by advisors  

  • 140 tailored MND information packs provided

  • 44 MND Support Fund grants distributed 

    (34% of requests were for equipment, 19% for quality of life therapies and treatments)

  • $48,268 in practical support granted  




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