Connection by the Waitematā: Celebrating the relationships that make a difference

Last week, people from across Aotearoa’s MND community gathered at the Emirates Team New Zealand boat shed for an evening of connection, community and a shared commitment to making time count.

Hosted by Motor Neurone Disease NZ and Emirates Team New Zealand, Connection by the Waitematā brought together people living with motor neurone disease (MND) and their family and whānau, alongside health professionals, researchers, supporters, funders and advocates beneath the AC75 Taihoro. It was a rare opportunity to bring the wider MND community together under one roof, alongside members of Emirates Team New Zealand.

The room was buzzing. Conversations flowed between people from all walks of life, united by a shared commitment to improving the lives of people living with MND and their families. New connections were formed, old friendships were strengthened, and powerful stories reminded us why community matters.

The evening also celebrated the partnerships that help strengthen support for people living with MND. We are incredibly grateful to Emirates Team New Zealand for their generous hospitality and ongoing support, and to Greg and Shelley Horton for their steadfast advocacy and commitment to the MND community.

A recurring theme throughout the evening was connection. Whether through support services, healthcare, research, fundraising or advocacy, meaningful progress happens when people work together.

In his address, MND NZ Chief Executive Mark Leggett reflected on the importance of support, advocacy, research and education, and shared a moving story that captured some of the realities of living with MND.

For those who were unable to attend, we are pleased to share his speech in full below.

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Speech from MND NZ Chief Executive Mark Leggett

To Grant Dalton, Kevin Shoebridge, Diana Mason, Greg and Shelley Horton, and the wider ETNZ team, thank you for your hospitality, support and friendship.

I’ve been following the preliminary regatta in Naples with great interest and wish you every success for the Louis Vuitton 38th America’s Cup next July.  Like us, there appears to be some work to do.  It was wonderful to have the Cup with us tonight, and we hope to see it return home again in 2027.

To our Board and Chair, our dedicated Motor Neurone Disease NZ team, Sir Richard Faull and Lady Diana, Dr James Cleland, the MND Research Lab team, health professionals, our sponsors, funders, supporters and fundraisers, thank you for being such an important part of our community.

Most importantly, I want to acknowledge the people living with motor neurone disease and your families.

You are the reason we are here.

You are the reason our team comes to work every day.

You are the reason we advocate, invest in research, and work to improve services.

And you are the reason every person in this room has gathered tonight.

I hope you enjoy this special evening.

When I think about Emirates Team New Zealand and Motor Neurone Disease New Zealand, I see some interesting similarities.

On the surface, we may seem very different. One competes and has a singular focus on a challenging subject aiming for a result.  The other sails boats…

Joking aside, at the heart of both organisations is the same thing: the team.

We are a relatively small organisation, but we are powered by an extraordinary network of supporters working together to achieve far more than any of us could alone.

As Lucy mentioned, ETNZ’s recent generous donation has provided us with a significant tailwind. It enabled us to add an extra support advisor role for Nelson Marlborough. We have just recruited Bee Williamson for this role.

Motor Neurone Disease NZ now has the largest support team in our history.

Earlier this year, we undertook a nationwide survey involving people living with MND, bereaved family members and health professionals to understand where they wanted us to focus our efforts.

The message was clear.

The highest value placed on our work, and the highest priority was our support service.

When someone receives an MND diagnosis, they need practical support, trusted information, access to services, and someone who will walk alongside them through an incredibly difficult journey.

The next priorities identified were advocacy, research and education.

Every day our team advocates for individuals and families to access the equipment, services and support they need. At a national level, we continue engaging with government ministers, Health New Zealand leaders and sector partners to drive meaningful improvements, including greater consistency in MND clinical nurse specialist coverage across the country.

Research also remains a key priority. We are committed to investing strategically in projects that improve understanding of MND and ultimately lead to better outcomes for those living with the disease.

Since 2017, MND NZ has fully funded the New Zealand MND Registry at the University of Otago. This year we contributed funding to Associate Professor Emma Scotter’s MND Research Lab at the University of Auckland and committed to ongoing support for this important work.

We have recently formed our first grants committee, with strong lived experience members and are preparing to launch our first research grants round later this month. We also have recently strengthened our capability in both education and research, adding an MND educator to the team, Jane Kay and appointing a new research advisor Shree Kumar.

Everything we do is focused on one goal: making time count for people living with MND and their families.

And none of this would be possible without community, the generosity of our supporters, and people who believe that no one should face MND alone.

To close, I would like to share a story.

These words were written by Francois Smith who was supported by our support advisor Sally King alongside his multidisciplinary team.

Francois was a gifted storyteller whose humour and insight helped others understand the realities of living with this disease. He wrote a blog in the months leading up to his death late last year, which we have permission to share from his wife Sharon.

Entitled “100% Trust, 5% Control”, this excerpt may make you smile and laugh, but most importantly it offers a profound glimpse into the everyday realities faced by many people living with MND.  It is really a privilege to give voice to these words.

Come into my world for a moment. I was seldom bothered by flies because I have the ability to catch and dispatch them by hand, or at least I did. I don’t know when I acquired this skill, but I took it for granted.

Now that my movement is limited to the slight movement of my legs and my head, a fly has been tap-dancing on my forehead for five days. He only makes brief appearances when others are in the room, just long enough for them to comment that the fly is irritating me, but not long enough for them to do something about it.

When we are alone, the bastard tap dances on my forehead, or does a quickstep up and down my arms, fully aware that I have not lost any feeling in my body. Consider the fly experience a metaphor, for all the things on a daily basis that were once in my control but no longer, and all the skills and knowledge I applied to perform those tasks.

Others can perform these tasks for me, but often not the way I would have. ‘So what?’ you might rightly ask. Today the fly showed himself while I had company. I asked that able-bodied person to kill the fly. Fly spray was applied and they left satisfied that they had performed this inconsequential task.

It is now day six, and I have a fly on the end of my nose giving me the finger.

So how do I cope? I accept that I have little control of the situation and trust 100% that those who are helping me are doing it to their best ability. By the way, I’ve named the fly George, I hope the :**÷* dies soon!

Update – George the fly passed away at 23:21 New Zealand time. Sharon dispatched George with such vigour that he spent his last minutes doing backstroke in an enormous pool of fly spray.

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Many thanks to you all for being here tonight, together we can help make time count for those impacted by motor neurone disease.

Ngā mihi nui. Thank you.

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Events like Connection by the Waitematā remind us that no one should face MND alone.

Whether through support, healthcare, research, fundraising or advocacy, every person and organisation represented on the night plays a role in improving the lives of people living with MND and their families.

Thank you to Emirates Team New Zealand for your generosity and hospitality, and thank you to everyone who joined us for an evening that celebrated the power of community and the connections that make a difference every day.


Photos from the evening: