WA Retinitis Pigmentosa Foundaion

History of the WA Retinitis Pigmentosa Foundation

By Bob Daniel

Today is a milestone in the history of research into retinal degenerations. Some 25 years ago, the late Dr Arnold Cook contacted a few people and held an initial meeting of what was to become our organisation. I was one of those people involved along with Jan Maglione and Ray Walters. Arnold has just returned from sabbatical leave in Britain, where he attended a meeting of representatives from several countries exchanging information and forming the basis of what we now know as Retina International.

The first RP body resulted from the efforts from Ben Berman and Gordon Gund in the US in 1971. This was a grass roots group of sufferers seeking help from researchers to find treatments and a cure for this range of eye conditions that were considered “too hard” for them to bother about. Four years later a group began in Britain mainly due to Lynda Cantor and supported, after initial doubts, by Professor Marshall. Professor Halliday had formed a retinal dystrophy group in New South Wales in 1975, with a view of collecting pedigrees of those affected with the various eye conditions.

Arnold had more positive ideas and proposed a self help group that would obtain funds and promote research. He managed to get our group registered under the WA Charitable Collections Act. Sadly in mid 1981 he suffered a heart attack and died. Fortunately, there was a conference in Baltimore later that year and funds were raised to send Bob Daniel and his wife to attend it.

This was a daunting task for Bob, who had not been overseas previously and who had limited knowledge of the eye condition and the various research paths. However, it was a wonderful experience as there were many conference sessions with eminent people describing the various aspects of the problem and the ways in which small groups like ours could play a part. There was also a great deal of information from sufferers of the condition, explaining how they coped and were able to carry on a relatively normal life.

On returning home it was realised that our group could not continue solely with its regular meetings and needed to find another avenue. As a result, a meeting was held with Professor Ian Constable at the Retina International conference and Dr John Black of the Bio Physics Dept at the Queen Elizabeth II Medical Centre. This led to the Family Testing Programme, which began in 1994 and still runs today. Our Foundation commences funding this programme from the beginning and continues to this day.

Another result of the Baltimore trip was the need to have a national body. NSW already had a group under the guidance of Wal Bolin. Victoria and South Australia formed in 1979 with the guidance of Gordon Merry and David Stokes respectively. It was all agreed that an inaugural meeting be held in Adelaide at the end of October 1983. Through this meeting, the Australian Retinitis Pigmentosa Association was formed, now known as Retina Australia with Bob Daniel as its first President.

In 1984, an international meeting was held in Helsinki, Finland where Australia was well represented by Wal Bolin, Gordon Merry, Bob Daniel and their wives. This conference was important as it set the pattern for similar meetings every two years and every endeavour was made to attach these meetings to an Ophthalmic Congress so that these eminent people could attend.

The first RP gene discovered by Dr Shome Bhattacharya was announced at this meeting and it seems as if a new research breakthrough was to be a part of every meeting from then on.

After that conference Bob visited Britain and met with several branches, learning a great deal about running a fund-raising organisation.

The first Australian convention was held in Melbourne in 1985, followed by a visit to Brisbane by Bob to assist in the formation of a branch in Queensland. Now all mainland states had branches and it was decided to set up a medical advisory panel to allocate research grants.

West Germany was the host of the 1986 international meeting and Australia was represented by Cameron Algie from Victoria, where he successfully campaigned for the next meeting to be held in Melbourne.

Prior to this, things were happening here in WA. Bob handed over the Presidency of the branch in 1987 to Lance Pereira and Cameron took over the national body. An emphasis was placed on increasing fund-raising and Dorothy Colgan put in a lot of voluntary time to organise several ventures with Lance. The following year John Colgan became President and our Foundation moved into its own office with Lance as Office Manager and using a marketing organisation to help with fund-raising.

The Melbourne international meeting was a great success with many overseas delegates and researchers attending. However, there was some dissention amongst the state representatives, which ultimately resulted in Cameron Algie and his wife Leonie Kelleher from Victoria leaving the national body for a while. Lance became National President and held this position until 1995. Several Australians attended the Dublin meeting in 1990, which was a great success with research breakthroughs being announced and an intense programme of speakers and workshops.

At home, Thom Dercksen took over the Presidency from John Colgan and our group dispensed with the services of the marketing company and became responsible for our own fund-raising. We also highlighted Macular Degeneration as one of the fastest growing forms of retinal disease.

Lance and Jean Pereira attended international meetings in South Africa in 1992 and France two years later. In 1995, the National Congress was held here in Perth and later that year Lance retired from his position as Office Manager. After serving as Assistant to lance since 1989, Vivienne French took over the reins as Office Manager, which ended in 2008. The Presidency has gone from Thom to Colin Hollier, Norm Hogg, Joy Witham, Robyn Wright and now Murray Witham.

Our Foundation has raised some $2m for medical research and there is real hope that treatments and a cure will evolve in the near future.

International meetings have continued to be held in USA in 1996, Italy in 1998, Canada in 2000, Japan 2002 and Holland in 2004.

The future seems very hopeful for those with retinal dystrophies. With a quarter of a century of research, most of the faulty gene have now been located. To many this work may seem quite slow but it must be remembered that mapping all the genes has been a colossal task. Now that this has been virtually completed, we can move on to producing treatments and even cures. Prevention is also an option for further investigation, as gene therapy can overcome genetic mistakes.

Result are not far away. As a British RP Society newsletter once stated:

“We have now almost reached the top of the mountain, but have discovered there is fence around the peak, which we have to get over. Thus we must continue seeking those funds to provide the dedicated researchers with the resources to climb over that fence and restore sight to those of us who have lost it.”