Then and now: How Glaucoma NZ came to be
While compiling our very first Glaucoma NZ Impact Report in 2025, we thought it fitting to share how and why this charity organisation began. Professor Dame Helen Danesh-Meyer explains this simply and eloquently by answering five questions below.
We acknowledge the founding trustees including Ken Tarr, Gordon Sanderson MMNZM, Mike O’Rourke and Professor Dame Helen Danesh-Meyer.
It’s a privilege to have the support and input of everyday New Zealanders who are affected by glaucoma in various ways. You are insightful and fundamental to the mission of Glaucoma NZ. With your support, we will eliminate blindess from glaucoma in Aotearoa New Zealand.
1. What moment or experience made you/the founding trustees realise NZ needed Glaucoma NZ?
The realisation came from patients. I remember one man who came in for his first eye check in years after failing his driving test. He was convinced he just needed new glasses. Instead, we had to tell him he’d already lost a large part of his vision — and that it couldn’t be restored. His shock, and the deep sadness on his wife’s face, have stayed with me. Stories like his weren’t rare. Too many New Zealanders were walking around unaware they had glaucoma until their vision was gone.
Clinics were often so busy that there wasn’t always the time to explore the deeper side of glaucoma — the fears, the family history, the everyday challenges of living with it. We imagined GNZ as the thread that could weave everyone together: the ophthalmologist, the optometrist, the GP, the pharmacist, the patient, and their whānau. Glaucoma needs that kind of collective effort. Our vision was for GNZ to hold those strands together, so no one felt they had to carry glaucoma on their own.
2. What was the vision when you first started, and how did you picture it making a difference?
From the very beginning, our vision was clear: no one should ever feel alone when told they have glaucoma. We wanted GNZ to stand as an advocate for patients, a partner for clinicians, and a voice to government — bringing together everyone touched by glaucoma. The aim was to create a community where people felt supported and informed, and where the health system was better equipped to respond. If we could replace fear with confidence and isolation with connection, then we were fulfilling that vision.
3. Were there any surprising challenges or turning points in those early days that shaped what GNZ became?
One surprise was just how silent glaucoma was outside the clinic. Even within families, people didn’t talk about it. That silence was dangerous. A turning point came when we published the very first Eyelights. Patients would bring it into appointments, underlined and dog-eared, saying, “This is the first time I’ve really understood what’s happening to me.” It wasn’t just information — it gave people a way to start conversations with their families and GPs. What we saw in those moments was the power of knowledge and connection: when people understood their condition, they felt less fearful and more in control. That sense of empowerment was exactly what we hoped GNZ could offer.
4. How did you want people living with glaucoma to feel when they first connected with GNZ?
We wanted them to feel connection — that they weren’t the only one. A diagnosis can feel like a door shutting, but our hope was that GNZ would open another one. I think of one elderly gentleman who came to a public meeting. He’d sat quietly at the back, and afterwards told me it was the first time he’d ever met another person with glaucoma. He said, “I thought I was the only one.” That sense of connection — of not being alone — was what we always wanted people to feel when they reached out to us.
5. If you could describe the “soul” of GNZ in one sentence, what would it be?
GNZ is about transforming fear into understanding and turning isolation into community, so that no New Zealander has to face glaucoma in silence.
PROFESSOR DAME HELEN DANESH-MEYER DNZM, FRSNZ, MBChB, MD, PhD, FRANZCO
Chair, Vision Research Foundation
Head of Academic Glaucoma and Neuro-ophthalmology
Sir William and Lady Stevenson Professor of Ophthalmology
Department of Ophthalmology,University of Auckland
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