Why the MND Insight Survey matters – Dr Natalie Gauld

Dr. Natalie Gauld, who was diagnosed with MND in 2022, is leading the MND Insight Survey, the most in-depth study of its kind in New Zealand. The survey aims to uncover what’s working, what’s not, and where urgent improvements are needed for people with MND and their families. By sharing their experiences, participants will help shape advocacy efforts, improve services, and inform future research. Natalie shares why this survey is so important and how you can take part.

Kia ora, 

Over the past few years, I’ve had the privilege of connecting with so many people in the MND community—individuals living with the disease, their family and whānau, and the health professionals who support them. Through these conversations, one thing has become abundantly clear: while we all experience MND in different ways, there are shared challenges that need to be better understood, and areas where change is long overdue. 

That’s why we’re launching the MND Insight Survey—the most in-depth survey of its kind in Aotearoa New Zealand. This is an opportunity for people living with MND, as well as their family carers, to share their experiences. What has worked? What hasn’t? What difference has support (or the lack of it) made to your journey? We want to hear it all. 

I know from personal experience that living with MND means constantly adapting to new challenges. It can be exhausting, frustrating and often isolating. But one thing we can do—together—is use our voices to make a difference. This survey will provide a clearer picture of the reality of MND in New Zealand, helping to shape advocacy efforts, improve services, and inform research. 

The survey is fully anonymous and can be completed online, on paper, or by phone (for MND patients). You can take your time, answer as much or as little as you feel comfortable with, and know that your insights will contribute to something truly meaningful. 

I encourage you to take part if you can—and if you know someone else who might be able to contribute, please share this with them too. Every response strengthens our ability to advocate for the support and change our community deserves. 

Taking part in the survey

Before you begin the MND Insight Survey, you must read the Participant Information Sheet (PIS). This is a requirement from the ethics committee to ensure you fully understand the survey’s purpose, how your data will be used, and your rights as a participant.

The Participant Information Sheet explains:

• Why this survey matters – how it will support advocacy, healthcare, and research for people with MND.
• What participation involves – including how you can complete the survey.
• How your responses remain confidential – and will only be used for research.
• Your rights – participation is voluntary, and you can skip any questions you don’t wish to answer.

By continuing with the survey, you confirm that you have read the Participant Information Sheet and agree to participate

Ngā mihi nui, 
Dr Natalie Gauld