Here I am. Sitting in the garden of our new home, looking out over rolling hills and sheep. A world away from the Netherlands, where I spent the first 42 years of my life. A small country (on the map) in Europe, but the place where everything began for me.
I grew up in a family with three brothers, and my mum lived with multiple sclerosis (MS). Some of you may be wondering whether I have left her behind. I haven’t. Sadly, my mother passed away in 2015 due to complications from cancer. Growing up with MS in our family taught me early on what the disease can look like, and, more importantly, that MS is never something you live with alone. As a family, you carry MS together, without fully realising how deeply it shapes everyday life.
The Netherlands is also where I studied, and where I began my career in MS research. In 2008, I started as a research assistant at one of the world’s leading MS centres: the MS Centre Amsterdam. In 2014, I completed my PhD, trying to understand why some people with MS develop cognitive difficulties (e.g., memory or processing speed) while others do not.
Since 2015, my work has focused on non-pharmacological approaches to cognition in people with MS. I want to help bring cognition out of the shadows: by talking about it openly with people living with MS, so they could feel more confident raising these issues with their healthcare providers; by working with neurologists and MS nurses to help create space for this complex topic in the consultation room; by listening to people with MS and their families about what matters most to them.
In mid-2025, my partner Mark and I decided to move our lives to the other side of the world. A unique opportunity presented itself: to become Director of the Centre for Brain Research at the University of Auckland, making it possible to realise our long-standing wish to live and work closer to nature. I followed in the footsteps of Sir Richard Faull – no small challenge. The chance to work alongside an exceptional group of neuroscientists to strengthen the impact of brain research, now and into the future, still makes my heart beat faster. As a bonus, CBR also had the ambition to establish an MS research clinic. It feels as though this role was written for me.
So here I am. On an island that is more than six times the size of the Netherlands, yet home to only around five million people. The Netherlands, by contrast, has a population of around eighteen million. Among them are approximately 36,000 people living with MS. In New Zealand, that number is estimated at around 5,000.
The 36,000 people living with MS in the Netherlands were not necessarily happy to see me leave. Who would continue to champion cognition and psychosocial functioning in MS? Despite the progress made in recent years, the work there is not finished. The topic remains complex, time in clinics is limited, and cognitive changes are still too often recognised too late. Fortunately, a group of excellent colleagues at Leiden University and the MS Centre Amsterdam will continue this work, in close collaboration with me. I fully agree that the work in the Netherlands is ongoing, and I have great confidence that they will carry it forward.
At the same time, I have come to realise that on the other side of the world there are also 5,000 people living with MS, and that issues such as cognition and psychosocial support may be even more under-recognised here. I will be honest: I had to pause for a moment when I realised how much work still needs to be done. Work I have been part of for nearly twenty years in the Netherlands, and which here, in some ways, feels like starting again. Looking at it from a more hopeful perspective, the lessons learned over those years can help accelerate progress in New Zealand, so that we do not need another twenty years to improve care for the invisible symptoms of MS, but can move forward more quickly.
I promise you this: I will do everything I can, together with healthcare professionals, researchers and MS organisations across New Zealand, to help shape care and support that truly reflects what people living with MS need, in all the complexity of everyday life. So that living with a diagnosis of MS does not mean being defined by it.
In return, I ask just one thing of you: walk alongside me. Share your experiences, challenge my assumptions, and tell me what matters most to you. Because only together can we make the world for people living with MS a little more understanding, a little more humane, and a little more hopeful.
Dame Helen Danesh-Meyer speaks on Vision Research Foundation study to investigate whether people with MS show distinctive patterns of eye movements
