Retina NZ 1989 - 2014

1989 is Retina NZ's official birth year, but we can trace our origins back to the mid-1980s.  That was when a number of men and women (such as Maaka Tibble in Auckland, Peter McGlinchey in Christchurch, and June Ombler in Dunedin) saw that people with inherited retinal conditions needed information and support.

The groups they set up formed the basis of the New Zealand Retinitis Pigmentosa (NZRP) Society, which evolved into Retina NZ.  There’s been a lot of action along the way.

Beginnings

In 1989 the Auckland-based NZRP Persons’ Society had its first AGM, and the Dunedin-based Otago/Southland RP Society its first public meeting.  NZ representatives attended the 6th biennial Congress of the International Retinitis Pigmentosa Association (IRPA) in 1990.

The two regional societies then formed a national NZRP Society which achieved full member status of IRPA in 1992.  Christchurch branch was set up in 1993, followed by Wellington in 1996.   Each of the four branches had its own administrative structure, and was represented on a National Executive Committee.

Scientific and Medical Advice

One of IRPA’s requirements for full member status was that national RP societies have in place approved Scientific and Medical Advisory Boards (known as SMABs) to provide them with advice on medical matters and their support for research.  In common with other Retina societies around the world, our long-term research priority was the establishment of a nation-wide database for inherited retinal disorders. 

National SMABs may nominate two representatives to the International SMAB.  At present (2014) Dr Dianne Sharp, who obtained funding early on to set up and promote a database of families with RP, and Dr Andrea Vincent, who later established an ocular genetic laboratory facility at the University of Auckland, are NZ’s representatives.

Over the years we’ve had great support from ophthalmologists, optometrists, and geneticists, both through our SMAB and through our informal relationships with individual members of the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) and the New Zealand Association of Optometrists (NZAO).

We’ve also sent delegates to every International Congress since 1990.  That’s kept us up with the latest in research, treatments, and progress towards eventual cures.  An early and popular feature of our newsletter was the variety of articles on scientific developments.

Reaching Out

In 1999, as Retina NZ, we launched our first website.  Our name change followed that of the IRPA, which became Retina International and broadened its scope to include all retinal dystrophies.

However, comparatively few people had ready access to the Internet back then.  Information about retinal conditions written for patients and their families was hard to find.  With SMAB oversight we published two booklets:  A Family Affair (about RP) in 2000, followed by About Macular Degeneration (2001).

Our nationwide Telephone Peer Support service was set up in 2000.  This continues to provide non-medical advice and information for people diagnosed with sight-threatening conditions (and their family members).  The Peer Support line is particularly valuable to those who are not eligible for Blind Foundation membership.  We’ve promoted this service by producing posters and pamphlets for distribution to hospitals, optometrists, and GPs.

Developing Partnerships

In 2001 Retina NZ became active in the field of blindness prevention.  Diabetes (leading to diabetic retinopathy) was already a public health concern.  However, sight loss was generally regarded as an “after-the event” disability issue.  We started working with other agencies who were advocating for vision and eye care to be part of the public health strategy. 

Key messages were the importance of early diagnosis of eye conditions, and the fact that at-risk vision and sight loss can be significant health issues in themselves.  Many people affected by visual impairment experience chronic anxiety, serious depression, and are at increased risk of falls and injuries which may be life-threatening.  We also helped promote the benefits of a healthy lifestyle: what’s good for your cardiovascular system is good for your retinas.

In 2003 the Hon Ruth Dyson (then Minister for Disability Issues and Associate Minister of Health) hosted a major event at the Beehive to launch NZAO’s Save Our Sight public education campaign for that year.  Wellington branch members helped organise the function.

Ruth Dyson spoke on "Preventing Blindness is Everyone's Responsibility.”  Supporting speakers were NZAO President Phil Donaldson, ophthalmologist Tony Wells (Glaucoma NZ), Gordon Sanderson (Save Sight Society), Don McKenzie (RNZFB), and Tony Haas, then President of Retina NZ.  Kaye Newton, Retina NZ’s incoming President, acted as MC.

The function brought together MPs, eye care professionals and industry reps, service providers, officials from government departments, and people from a variety of community organisations with an interest in health and/or disability, diabetes, and the welfare of senior citizens.

Building Connections

As a voluntary organisation, our resources are limited.  Going it alone is rarely an option for a small special-interest group.  We were keen to keep looking for opportunities to work in partnership with other agencies with a common cause.  We also sought additional sources of assistance for our information and support projects, rather than rely solely on the RNZFB (now the Blind Foundation).

One of our earliest projects to receive external assistance was the Peer Support Manual developed as a resource for the team providing telephone support.  It covered a range of topics, such as available services for those adjusting to vision loss, personal safety and health care, additional sources of information, and new technology, and was produced in 2005 with help from the AMD Alliance International.

 In 2006 Yates, already a supporter of Retina Australia, launched the NZ version of their Bright Eyes Cosmos seed packets, providing Retina NZ with a welcome donation from sales.

Another aim was to increase the opportunities for active participation, at national and local levels, of our members who lived outside the main centres.  We began a review of our governance with a view to shifting from the formal arrangement of four branches (each with its own admin structure) to a single national administration.

Our new constitution enabling these changes was ratified at our 2008 AGM in Hamilton.  Having that year's AGM & Conference in Hamilton (rather than Auckland) was part of the move to involve more members.  Meeting in a variety of locations would make it easier for members – most of whom are dependent on public transport or lifts from friends – to attend at least one AGM & Conference.  The 2009 location was Paraparaumu, and in 2011, Tauranga.

We also held public meetings in the smaller cities such as Nelson, Napier, and New Plymouth, and encouraged the spread of local self-help groups who could meet more frequently for a mix of social and peer support activities.

Reaching Our Quarter Century

Technology was having an effect on the way we worked and our priorities.  Good quality, easy-to-read information about retinal conditions was now readily available on the Internet.  New technologies were also creating amazing accessibility options for people with sight loss, and articles about these had become another regular feature of our newsletter.

In early 2010 we launched a new website with technical support from NZORD.  While our newsletter remained the primary source of communication with members, our website provided an up-to-date introduction to Retina NZ, and a resource for those carrying out their own information searches.

Later that year we made a donation from our research fund towards the establishment of a New Zealand-wide registry for inherited retinal disease at the University of Auckland, and supported the Walking into the Light fundraiser.

2011 saw the first edition of Your Blue Book – our beginners’ guide to coping with vision loss – published with assistance from the NZ Lottery Grants Board as well as the Blind Foundation.  This was followed by the start-up of our Retina Youth forum, initially on Facebook, then with its own quarterly e-newsletter, and (in 2013) its own website.

In 2012, in co-operation with the S.A and G.J Ombler Charitable Trust, we established an annual Summer Studentship Research Award, with SMAB member Associate Professor Gordon Sanderson as our advisor.  By 2014, the annual growth of our Research Fund enabled us to fund the Award alone.

At the 18th Retina International Congress in Paris in June 2014, our bid to host the 2018 Congress in conjunction with the University of Auckland was successful.  A great finish to our first quarter century.

Retinal photographs on this website are courtesy of the New Zealand Association of Optometrists. Other photographs in our page headers are courtesy of the National Eye Institute, National Institutes of Health.