A year at MND NZ: Reflections on 40 years of strength and action

A year as Motor Neurone Disease NZ’s Chief Executive

Over the past year, Motor Neurone Disease NZ has continued its mission to support, advocate for, and push for progress in research and care. As we mark our 40th year, we reflect on the challenges, achievements, and resilience of our community. Chief Executive Mark Leggett shares his insights from his first year in the role and looks ahead to what’s next for the charity.

It’s been a year since I stepped into the interim Chief Executive role with Motor Neurone Disease NZ. Working alongside our small but dedicated team and connecting with the incredible MND community through local support groups has been a privilege.

A career working in the general health and disability context, particularly in management roles, means seeing things at a high level with minimal detail. Stepping into this role and getting to know this community and its challenges has brought that detail into sharp focus. The frustration levels of people with motor neurone disease (MND) and their families—at the lack of progress in research and, at times, the lack of understanding within the support sector—can be visceral.

I’ve found that Motor Neurone Disease NZ is up for that challenge, and I’ve been pleased to step into a well-formed service and work with the team and the community to make meaningful progress.

40 years of advocacy and support

This year marks 40 years since Motor Neurone Disease NZ (or its earlier versions) was founded—a milestone worth recognising but not celebrating. In health and disability services, success would mean becoming irrelevant. It would mean a cure or effective treatment had been found. But with MND, that breakthrough remains elusive, leaving 300,000 people worldwide and 400 here in New Zealand still waiting. That’s why we’re here, working harder than ever to push for progress.

As a small charitable trust, we focus on service, support, advice, and advocacy. Our size and budget may limit us, but I believe we punch well above our weight. Our Support Service Advisors travel the country, providing guidance and support to most of the 400 people living with MND, their families, and whānau as they navigate this challenging journey.

We’re also committed to supporting research—both at the cutting edge of clinical and genetic studies and in quality-of-life research. By understanding the medical and everyday realities of MND, we can advocate more effectively, using data and insights to push for better support systems and innovations.

Grounding in the MND community

I’ve tried to connect directly with the community through a small number of one-to-one meetings and by attending local support groups. As you’d expect, I’ve met people at all stages of their journey, and I’ve universally witnessed courage, humanity, frustration, powerlessness, powerfulness, and, at times, a dark humour that almost always accompanies such communities.

I’m proud to be part of an organisation that stands alongside this community and hopefully assists by listening and taking some of the load, while working on solutions and answers for right now and the future.

Making time count

We’ve recently reviewed and updated our vision and mission statements to be more precise and meaningful. These identify our priorities and guide our allocation of resources as we build a strategy alongside the community. We’ll always support clinical research that aims for treatment or, preferably, a cure. However, given our small size and resources, our primary focus is on dealing with the challenges that people with MND face today and in the future.

We talk about making time count because, right now, time is the currency of motor neurone disease that’s in short and diminishing supply.

Throughout my career, I've worked widely across the health and disability sectors, and I’ve been privileged to see, lead, and contribute to building solutions through policy responsiveness and service development. These have always required high-quality data and information, a willingness to innovate and challenge the status quo, and, most of all, relationships that lead to positive collaboration and outcomes.

Building stronger support networks

How does this relate to the MND community? The MND community is small and doesn’t fit into the typical disability space. We need to work with our colleagues in policy development, clinical services, needs assessment, and community service delivery to build the most appropriate support frameworks that reflect the unique challenges of this disease.

Our progress and achievements

Over the past year, we’ve:

• Strengthened our national support network to directly reach more people with MND and their families.
• Invested in research initiatives that bring us closer to breakthroughs in treatment and care.
• Expanded advocacy efforts to push for better resources and services for the MND community.
• Built stronger partnerships with researchers, healthcare professionals, and global organisations to accelerate progress.

Looking ahead

As part of our ongoing commitment to understanding and improving the lives of people with MND, we are supporting the MND Insight Survey, led by Dr Natalie Gauld, who was diagnosed with motor neurone disease in 2022. This important research will provide valuable insights into the needs of the MND community, helping us advocate for better support, services, and funding. We encourage everyone in our community to take part and have their voices heard.

To participate, please click here.

I’m incredibly proud to be part of this team and this community.

As we mark our 40th year, we remain focused on when MND NZ will no longer be needed because a cure has been found. Until then, we’ll keep pushing forward.

If you’ve ever watched someone you love lose the ability to move, speak, or breathe, you’ll understand why we won’t stop fighting.

Stand with us. Be part of this movement.

Mark Leggett
Chief Executive, Motor Neurone Disease NZ