Retinitis Pigmentosa: A vision ahead

Michael Griffith“I wasn't very badly affected by RP in 1983 but my father was and I was very concerned by his state. I got in touch with people in Ireland affected by the condition and we in turn contacted the British Retinitis Pigmentosa Society and started Fighting Blindness,” recalls Michael Griffith. Retinitis Pigmentosa (RP) is the name given to a group of hereditary eye disorders. These disorders affect the retina, which is the light-sensitive tissue lining the back of the eye, in which the first stages of seeing take place. In RP, sight loss is gradual but progressive. Michael Griffith's brother, uncle and aunt are also affected.

Under Michael Griffith's leadership, Fighting Blindness has grown from a relatively small organisation to a leading charity promoting research in retinal blindness. This progress is due to the enthusiasm of Michael, that of the Fighting Blindness team and also to some great people that the ex-Chief Executive of the charity met throughout his career. In May 1984, Michael Griffith participated in the Helsinki meeting of Retina International and met with Professor Shomi Bhattacharya from Edinburgh who had just announced that he made a linkage between RP and one area of the genome. “I knew nothing about genetics and Professor Bhattacharya told me a lot. I was amazed at the power of genetics and was sure that this would be the right way to go. So I asked him if he would come to Ireland and start research there,” says Michael Griffith. Indeed, that's what Professor Bhattacharya did, in June 1984. Both men went then to meet David McConnell, the head of the Genetics department at Trinity College in Dublin, to ask if he would consider doing some research on RP. “He was interested and said he would do a preliminary study for one year that would cost £10,000. We had half of that money, borrowed the other half and in 1984 started the study,” remembers Michael Griffith. Shortly afterwards, the organisation organised a raffle and the Fighting Blindness team sold £200,000 worth of tickets with a net profit of £115,000! “In 1985 we gave a grant to Trinity College of £100,000 for a three-year (internationally peer-reviewed) research programme.

This programme proved to be one of the greatest achievements of Fighting Blindness and more was yet to come. In the same Helsinki meeting where he met Professor Bhattacharya, Michael Griffith also met with Ben Burnam from the American RP organisation. “They had established a lot of research programmes in the US and when I asked him if he would fund research in Ireland, he said to me: ‘If you've got good research, we'll fund it'. So in 1986, I thought that it was the right time. I persuaded the genetics department of Trinity College to apply to the US organisation for some money,” recalls Michael Griffith. On the basis that the US organisation would grant them a half of their application, Michael Griffith convinced the team to ask for half a million pounds. Guess what? They got a half a million pounds' grant for five years (1987-1992)!

In 1989, the Trinity College team discovered the first gene known to cause RP - the Rhodopsin gene. “This discovery was a huge breakthrough for us patients, for all patient organisations and scientists all over the world,” Michael Griffith recalls fondly. “We felt our efforts had made a difference internationally.” He clearly states this discovery as a milestone in his career as a patient representative.

Fighting Blindness logoOne of the challenges that expanding organisations like Fighting Blindness have to face is that, while they deal with international research, they still remain patient organisations with “daily” patient issues to attend to. For the Irish organisation, which had become a catalyst for research, getting the members excited and involved in the different research programmes was one of the ways to keep in touch with them. “We have meetings with our own researchers and international scientists at least once a year, we speak to our members, write to them, keep them informed,” says Michael Griffith. Fighting Blindness also started a counselling service run by Mary Lavelle, a registered psychotherapist who herself is affected by RP. “RP and other retina problems have a huge impact on your whole life. It can diminish your self-esteem because usually you grow up healthily, may be you were fit and strong and then, you slowly decline and can become hugely dependant. The counselling centre is a very successful service because Mary Lavelle is herself visually-impaired and patients have a great trust in her. She also has a business background so she runs the centre in a very business-like way,” tells Michael Griffith.

Fighting Blindness was started by people with no scientific background and Michael Griffith feels that this is not a disadvantage. “To succeed as a patient representative, you have to be dying with enthusiasm and be so absolutely and entirely determined that no matter what happens, you'll start again and again. The other thing to understand is that if you have money, everything gets easier! Raise money as quickly as you can and find a scientist that will be eager to start a research programme.” Of course, this is not as easy as it seems: Michael Griffith recalls searching for a scientist for two years to start a programme on stem cell research but this is exactly where his first advice about being determined comes in handy...

Mr Griffith - who was also a chair of another Irish charity, Debra Ireland - fostered partnerships with both national and international organisations. He was instrumental in the formation of the Medical Research Charities Group (MRCG), the Irish Platform for Patients Organisations Science and Industry (IPPOSI), the European Platform for Patients Organisations Science and Industry (EPPOSI) and held the position of Chair in each. He was also Vice President of umbrella group Retina International. Michael Griffith believes that partnership is a sine qua non condition to the success of patient organisations. “Even if I think that throughout the years, people have started to realise that this is the way to progress, some groups won't work together because one organisation feels threatened by another. I find this very difficult to deal with because it is frustrating but I must say that EURORDIS has done a great deal  to improve things on this level.

Beau, patient | malade | paciente | paziente | paciente | PatientMichael Griffith feels that there are too few patient representatives working on a European level and that a “professionalisation” of this job will be one of the challenges of tomorrow. “There is an education about the whole business of running health-related organisations - lobbying, advocacy, policies, fund raising, regulatory issues. This body of knowledge is essential and when people start working in charities or organisations, they are taken aback by the complexities of this world. There is clearly a lack of training.”

Ireland is trying, thanks to IPPOSI, to establish a university diploma course to educate patient representatives. “This training will help them to deal with industry partners, research partners, official partners and be stronger and better equipped to fight against rare diseases on any level,” concludes Michael Griffith.


This article was first published in the June 2008 issue of the EURORDIS newsletter

Author: Nathacha Appanah

Photos: Michael Griffith, Fighting Blindness © FB;  Beau © Rik Vandenhende/Eurordis

Page created: 24/08/2010
Page last updated: 06/08/2013
 
 
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