The British Retinitis Pigmentosa Society
Autumn Newsletter 2010: Issue 136
IN NS SIID DE E... ● Report & Minutes: Members’ Conference and AGM 2010 ● New Research Cures RP in Mice ● How Do I Get a Genetic Test? ● Fundraising News and Opportunities: Run, Cycle, Walk, Dance ... ● Assistive Audio and Technology ● Branch News and Members’ Stories ● The John George Award for Volunteering ... ... and lots more
Trek Keep the helping! FalklaPropose nds aMembership nd RaisetoRFriends esea&rcFamily! h Fund1s!
Contents Letter from the Chief Executive Stakeholder Liaison Group Members’ Conference The John George Award for Volunteering Member’s Area: Research Info & More … Sight Restored to Mice Afflicted With RP Genetic Testing Member’s Article Minutes of the AGM RI Conference Assistive Audio and Technology Calendar Dates New Befriending Service Fundraising Branch News Goods and Services Crossword Puzzle No. 9 (Summer 2010)
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Find out how to take part in a wonderful challenge taking in the spectacular views and wildlife of the Falklands on our website (see below). The trek takes place in December 2012, a first for any UK charity! RP Fighting Blindness (BRPS) Charity No. 271729 We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. Our Helpline is on 0845 123 2354 or at helpline@brps.org.uk. Our office contact details: PO Box 350, Buckingham, MK18 1GZ Tel: 01280 821334 Email: info@brps.org.uk The 2
deadline for the Winter magazine is 10th Nov to info@brps.org.uk
Letter from the Chief Executive David Head MBA Dear Members Welcome to your Autumn magazine. It never fails to amaze me how quickly these come around and how fast time passes. Once again, in a very packed magazine, we feature the Members’ Conference and AGM; this time with the formal minutes and a brief report. We are in busy times. Since the last issue Sally Smith, our fundraiser here in Buckingham, has left us. Her replacement Julie Child will be starting at the beginning of October, and brings a wealth of experience from the Lymphoma Association and Hearing Dogs for the Deaf. You will get to meet her at our various events of course. We all wish her every success. Despite the staff shortage for a few months we are on track at the half year point for our income target. My thanks are due to all of you for supporting us with additional donations or by taking part in events. This quarter I send special thanks to our group of intrepid adventurers travelling to Namibia in September. Look out
for a report and photos in our next edition. We really need to maintain the constant support of our membership, so a wide range of events are being planned with something to appeal to everyone. For example, if you are near or can get to Milton Keynes, please can I ask you to support our “Bombay Dreams” night on 9th October. This fantastic evening of Indian dancing, music and food is organised in partnership with the Lions Club. You can get tickets from our website or by calling Michelle at the office.
It just remains for me to thank you all again for supporting our work, and I hope to see many of you on 9th October! David Head Chief Executive 3
SLG: A Group Member Writes By Christopher Hoult When the Big Lottery Fund funded Professor Cheetham’s project at UCL, we set up a team to link the researchers with members who might benefit from the project. This became the important “Stakeholder Liaison Group”. When I saw the invitation to join the “Developing Therapies for Rhodopsin RP” Stakeholder Liaison Group (SLG), I was reluctant. Firstly I had been a member of RP Fighting Blindness for many years but had always kept the relationship at a distance; I had been able to work and cope with RP and I was afraid what I might find if I “took the lid off” and had a good look. Secondly, scientific research, what could I contribute? My science ceased years ago with a failed 'O' level. Boffins sitting round a table splitting atoms all seemed to be outside my comfort zone. But something was telling me to volunteer. I have an analytical mind and am not afraid to ask the idiot questions. Many ex colleagues would vouch for that! I am also familiar with committees and the sound of my own voice. I'm so glad that I did go ahead. We
have a good spread of members; from Bristol, Norwich, Leeds and others that I do not know. I have attended two meetings so far and am still getting to know everyone. We have a good range of backgrounds. Diverse careers have given the group useful skills to make a worthwhile contribution. The project is funded by the lottery and a stipulation was that “beneficiaries” should sit on the group. This may seem a strange choice of word, but if a breakthrough is made as a result, we would benefit, wouldn't we? As I expected, a lot of the science is going over my head. What I do know is that we ARE getting the chance to challenge researchers on their work and progress. Our group gives the lay perspective and asks the simple but telling why? when? what? questions. Sometimes researchers can be detached from the project's aim. We can provide the focus. Attending the meetings also gives us hope for the future. In our small way we may be helping to shape the next breakthrough. Personally, I've also laid a few ghosts. Getting involved, meeting other RP members has been a pleasure and an education. What better reasons are there for taking part?
As the ‘Cheetham’ project develops, detailed information will be made 4 available in the member’s area of the website: www.brps.org.uk
2010 Members’ Conference in London David Head our CEO reports Over 160 members made the trip to London on 19th June for our annual Members’ Conference, which again consisted of four sessions including our AGM. The formal minutes of the AGM are on page 14, and members are also notified that the 2011 AGM will be held on Saturday 25th June at Friends House in London, again as part of our annual conference. The three other sessions were the launch of the John George Award for Volunteering, presentations from our Information & Support (I&S) team, and of course the ever popular medical research section. The John George Award is described in a separate article in this magazine, the inaugural award being made to Beryl Duggan, a long standing member, volunteer, organiser, fundraiser and supporter. The recognition of our volunteers work is well deserved and our aspiration is that this, and other awards, will become an annual part of the event. Our I&S session was Chaired by Sue Drew our Outreach Officer and commenced with a brief report from Carole Holmes on the Helpline service and planned Befriending Service, which again is described in a separate article. Sue then introduced her son Graham to the stage, who spoke with passion and conviction about the charity, RP, research and fundraising from a young person’s point of view. A recording is available 5
on our website in the news section and also on CD, and is recommended listening for all of our members. The I&S session ended with a presentation from member Ken Reid, who is also an ambassador for Vision 2020. This informative session has led to a move by our vice Chair Don Grocott to get us more involved in Vision 2020 and the UK Vision Strategy. More information about this will be in a future magazine but details are also available at www.vision2020uk.org.uk. The medical research session was Chaired by Professor John Marshall and we are grateful to him for hosting this plenary once again. He was joined by Professor Mike Cheetham and Dr James Bainbridge, both from Moorfields Eye Hospital and the Institute of Ophthalmology. The lively session included an open ‘Q&A’ which tackled subjects ranging from genes to implants, from collaboration and competition amongst scientists to computer models of RP, and from media reporting to new prospects for treatment. All three scientists gave frank and open answers to questions from the floor and the two guest speakers provided an interesting insight into their own RP related projects. A recording of all four sessions of the conference has been made available on our website at www.tinyurl.com/membconf. A CD version is available on request from the office. There is no charge for the recording but donations towards the costs (about £4) would be much appreciated.
The John George Award for Volunteering The charity's inaugural John George Award for Volunteering was presented on 19th June, at the Member's Conference, to Mrs Beryl Duggan. Beryl was recognised for her contribution to the charity's support work over many years, including acting as our “parent link” and extensive involvement in the provision of our helpline service. In nominating her, Carol Holmes said, "Beryl joined her branch in 1976 as her son Chris has RP. She has held garden parties at her home and banquets at Chester Town Hall. Her husband Jim was chair of the 6
branch for 10 years and Beryl provided lunches at the meetings. She spent many Easter weekends fundraising at the Nantwich Jazz festival. Beryl is an active member of the welfare team and leads our parentlink group supporting parents of RP children”. In presenting the award Muriel George said how important the charity had been to John and that she was proud to remember him in this way, whilst recognising the importance of volunteers to our work. Trustee Lynda Cantor also took the opportunity to thank volunteers past, present, and future, and said that her success in founding and building the charity had only been possible because of volunteers. The other nominees for the award were: •
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Cliff Beavers, who started a branch 30 years ago and was chair for over 20 years. Edith Gale, for constant, various fundraising events. Prof. Alan Wright, who as well as being an RP researcher regularly attends member meetings to appraise us of his work and that of his colleagues. Aileen Playfair, an active, long-time and supportive member of the local branch. Rosemary Honeyman, branch treasurer for many years and still a regular fundraiser.
We are looking forward to receiving your nominations for next year’s award. Nominations can be made by any member.
Remembering a Loved One by Sponsoring an Award The John George award, which will now be made each and every year, was instigated by his widow Muriel as a way of remembering John each year and recognising the value of volunteers to the charity. Next year we would like to make further awards too, so if you would like to remember a 7
loved one in this way, or if you can simply sponsor an award as a way of supporting the charity’s work, please let us know. You can do this by contacting David Head, Chief Executive, in confidence, on 07720 444084 or david@brps.org.uk.
Member’s Area: Research Information and More …
Did you know that as a member you have access to our Document Library in the “Members’ Area” of the website?
Apart from the recent Quarterly Newsletters (going back a full year), Trustees’ Report & Accounts (back to 2009) and members’ articles, members can view the Research Reports from 2005 to 2010. We give you a flavour of some of the research RP Fighting Blindness helps fund in these magazines, but if you want more detail, you’ll find the latest Research Report more helpful. This year’s covers 14 avenues of research, ranging from the identification of genes for various forms of RP, via photoreceptor replacement therapy, through to widening access to genetic testing services. Browse at your leisure the path covered by researchers to date by exploring earlier reports. As a reminder, the website address is http://www.brps.org.uk. Once there, click on “Members’ Area”, enter the password retina, then select “Document Library” (down the left hand of the page). You have helped fund this research - so do have a read! __________________________________________________________
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Sight Restored to Mice Afflicted With Retinitis Pigmentosa Swiss researchers from the Friedrich Miescher Institute, in collaboration with others, have restored sight to mice afflicted with retinitis pigmentosa. The results have been confirmed ex-vivo, on human tissue cultures. The team, led by Jose-Alain Sahel, is also reported as having determined the types of patient who could benefit from the therapy.
Retinitis pigmentosa is manifested by a progressive loss of sight, eventually leading to blindness. It is a form of inherited retinal degeneration that affects the light-sensitive cells of the retina : photoreceptors. There are two types of photoreceptors: rods and cones. The disease leads initially to degeneration of the rods which are responsible for night vision, and then the cones, which are responsible for daytime vision, become affected. Whereas the rods are destroyed, the cones can survive in the organism for extended periods, even after blindness. This inspired the FMI researchers to develop a genetic therapy to restore the visual function of the cones which were defective (dormant) but remained present. At the stage of the disease where the researchers have intervened, the cones still retain some electrical properties and their connections. Hence, they are able to be activated artificially. Earlier work had shown that light-sensitive ionic channels had the ability to modulate electrical activity from various neurons into which they had been introduced, in response to the level of light. By combining these two observations, the researchers have succeeded in reactivating cones and thus allowing re-stimulation of the mice's transmission channels. To achieve this, they have introduced a protein, via a genetic therapy vector, which is capable of coupling luminous 9
stimulation to ionic transport, hence reintroducing the phototransduction cascade required for vision. The researchers have therefore recreated a genuine biological photoelectric system. "We integrated the clinical approach as soon as we obtained the first fundamental results of this work. So, at the national reference centre for rare diseases of the retina, thanks to non-invasive high-resolution retinal imaging techniques, we can now target patients to whom this therapy could be applied" explains JosĂŠ Alain Sahel, who also points out that the transition from mice to man always carries many uncertainties. Professor John Marshall, Chair of the RP Fighting Blindness Medical Advisory Board, commented, “This is something that (has been speculated) about for years and I'm absolutely delighted that someone has at last investigated the potential. Useful clinical treatment is a long way off but this is a step in the right direction, activating cells that are already present and therefore do not require all the complex wiring that implants or stem cells would demand. I think this is great news but, it should be emphasised, it is very basic research at this stage. The real breakthrough is when we can actually get the dormant cones to regenerate new outer segments.â€? _________________________________________________________ .
Genetic testing For a whole host of reasons, not least the potential of gene therapy as a way of treating RP in the future, genetic testing, and access to it, is becoming an increasingly important area for discussion. RP Fighting Blindness is funding the development of genetic testing at Manchester University under the supervision of Professor Graeme Black. Here Graeme answers some of the more frequestly asked questions on the subject ... ... 10
Who should have genetic testing? Not everyone needs a genetic test, and while in the future testing may direct treatment (for example by showing those who may benefit from gene replacement therapy), currently testing is used to define the type of RP that affects an individual in a family (dominant, recessive, Xlinked) in order to help individuals under-stand the risk that they may
develop the condition or the chances that they may pass a faulty gene on to their children. Currently the NHS offers testing for a number of retinal conditions. The laboratory in Manchester tests for X-linked and autosomal dominant forms of RP, as well as for types of Leber’s amaurosis. Tests are also performed for choroideremia and macular dystrophy. The Cambridge lab also tests for retinoschisis. Genetic testing can only be offered to affected family members in the first instance. Unaffected but at risk members may only have genetic testing once the causative gene fault has been identified in the family.
What is genetic testing performed on? Gene testing is usually performed on DNA extracted from a simple blood sample.
How do I go about accessing testing? Unfortunately genetic testing is complicated and expensive to the health service (patients do not pay for testing). It is also timeconsuming and for these reasons
it is important that the correct test is performed on each person. Furthermore we believe that it is important that results are passed back to patients by doctors who can interpret the results of gene testing for you. As a result, genetic testing laboratories prefer that patients are referred by centres that have experience in genetic counselling. Such centres may have either clinical geneticists or ophthalmologists who have an interest in inherited disorders associated with visual loss, and you may be referred to them by your GP or ophthalmologist. Once there you will be able to ask about RP, and also to learn about both the advantages and disadvantages of the testing. This means, of course, that samples cannot be sent directly by a GP for genetic testing.
If I want it can I always get genetic testing? Since gene testing is not yet available through the NHS for all forms of RP, you may find that testing is not possible for your form of RP at the moment. However it is very likely that new technologies will allow for testing in the future. 11
At present the NHS cannot undertake gene testing for everyone who has any type of inherited disease, so doctors generally need to consider the reasons to test a person for a genetic disease - in particular whether it may change how a doctor diagnoses a patient’s condition or where the test will alter how a patient makes decisions in his/her day to day life (for example decisions around career and job planning, or reproductive and life choices). RP Fighting Blindness will be taking part in two projects looking at ways in which access to testing might be improved. We have also recently committed to providing Professor Black’s team with a further 5 years’ funding with a view to expanding the number of different forms of RP that can be detected through the tests, and improving the technologies used.
Did you know ... ... that the Members’ Area of our website includes a section on genetic testing? This includes access to a recent report to our Trustees on this important issue. These documents are available to read or download and can be accessed by screen-readers too. . 12
Member Article Malcolm’s Story
My name is Malcolm Grange and I want to share my journey - how I learned to handle being blind. Today, there are ever more blind or visually impaired elderly people and, importantly, considerable numbers of younger blind people too. As with sighted people, all blind people are different. The difference is that sighted people can (often) more easily solve problems by themselves. The experience of losing your sight often revolves around how diagnosis is made. It is something of a shock and there are many ways people will react. The most important part of being diagnosed is the way it is explained to you. The consultant is likely to be the first person to give you the news. In my case, since the doctor was unfamiliar with my particular problem, I was sent to my local hospital where I was introduced to a senior consultant and eventually diagnosed with RP. From there, I was transferred to Moorfield's Eye Hospital and my understanding of
my condition grew; for example I was told that RP is genetic, and that apparently both my mother and father had the faulty gene, which is very rare. It was at this stage I decided to become pro-active and to call the RNIB (now the Royal Society for Blind and Visually Impaired People). I became a member and one day, I was listening to their information sheets about "talk and support" and decided to risk going into London for a meeting about it - alone. I remember the taxi driver refused my offer to pay the fare how times have changed! When I arrived, there were several people wondering what to expect. At the time, listening to an explanation of "talk and support", I certainly didn't think that I would be here today working on the scheme. The long journey helping others, listening to them as a facilitator, has helped me too. I’ve been very impressed at how many blind people really enjoy sharing their experiences. My wish to help became a reality. Being involved has allowed me to maintain contact with many caring people. In my many years on the membership forum, I have been able to help these wonderful people and often become great friends. I have kept in touch with all of them.
This activity together with strong support from friends and family have enabled me to keep to my objective of staying positive about living with blindness. For me this has been very important. However I do realise that people with blindness are just like ordinary people - all different. I hope this has encouraged you to do it your way. In my experience blind people can enjoy many things, despite everything.
If you would like to contribute an article, please send it to the office address or (preferably) by email to info@brps.org.uk. We cannot guarantee publication but we do our best to include as many items as possible. The deadline next time is November 10th.
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Minutes of the 34th AGM of RP Fighting Blindness Our AGM was one of four sessions at our Members’ Conference on19th June. These minutes will be formally presented for approval at the 2011 AGM.
Introduction Sir Alan Rudge (Chairman) welcomed about 160 members to the meeting, thanked everyone for attending and introduced David Head (CEO), Lynda Cantor (Hon President) and Henry Bennett (Treasurer) to the delegates. Apologies had been received from Sophie Montgomery and Alan Foster.
Minutes Minutes of the 33rd (2009) AGM were unanimously agreed, by those who had been present, to be a true record. There were no matters arising.
Trustees’ Report Sir Alan presented the 2009 Annual Report and Accounts to the meeting and highlighted several points. 1. 2009 was ‘an interesting year’, including a successful first trek to the Sahara Desert and successful fundraising for the London Marathon. Applause was invited to express thanks to our Marathon runners. 2. Despite the troubled economy, our research programme had been unaffected and had been able to progress without financial constraint. 3. The charity is in good health financially; this would be expanded on by the Treasurer later in the session.
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4. Behind this there is a lot of hard work by volunteers, including trustees, medical advisers, fundraisers, branch officers, helpliners and more. Applause was invited to thank volunteers for work over the year. 5. Sir Alan thanked in particular Colin McArthur (Trustee) for all his fundraising work, particularly his taking on challenges such as flying aircraft, catamarans and hovercraft (warmly applauded by the meeting.)
Treasurer’s Report Henry Bennett presented the 2009 accounts, highlighting that: 1. Last year he had indicated difficult economic circumstances were still ahead and indeed this had proven to be the case. Nevertheless a good performance had still been achieved. 2. Total income was down £59,000 compared to 2008, at £769,000, but £49,000 of this was due to reduced investment income (interest). It was important to have a diverse range of income sources. In general Henry felt that individual giving will be easier to maintain than corporate income in difficult times. Legacy income was up, at £109,000 for the year. 3. Fundraising costs had risen as expected as we move to a paid staff organisation, and governance costs remain a very small proportion of total income. 4. In 2009 we made 11 research grants totalling £497,000. Allocated to 2009 accounts was £392,000. The difference being because projects are usually for three years and the allocation of funds does not always align exactly with the time that payments are made to the projects. 5. Particularly pleasing is that at no point had the trustees had to decline a medically sound application for a grant on the grounds of affordability. 6. Our financial position remains strong and trustees intend to increase the amount committed to research in coming years. Henry also invited questions and comments about the financial reports: Q: Why has the auditors’ remuneration doubled? A: The cost has increased but not by as much as the accounts imply at face value. This is because some work on the 2008 accounts was 15
charged after the books were closed for that year and thus is included in the 2009 figures. The cost of audit is rising but has not doubled.
Resolution Sir Alan asked for a show of hands to accept the Annual Report & Accounts. This was accepted without opposition.
Resolution Sir Alan asked for a show of hands to re-appoint Davies Mayer Barnett as auditors. This was accepted without opposition.
Chief Executive’s Report Sir Alan introduced David Head (DCH), by outlining our aspiration to increase income very significantly and the need to build a paid team to deliver this. DCH thanked Sir Alan for the introduction and said that because the Trustees’ Report included an operational report, and sessions at the conference would cover finance, research, and Information & Support, he intended not to discuss these, but to speak on plans for the future, fundraising activities, and a few thank you’s.
Plans for Development The latest 5 year plan starts on 1st July. The delay was to allow work on our infrastructure and to account for the difficult economic times of the last year or so. Sally Smith has left us and we are now recruiting a new fundraiser. This will be a very important appointment and if successful, we will be recruiting again in early 2011. The trustees and DCH believe that the plans to grow are perfectly valid, even in the difficult times. Interestingly, despite the recession, 2008 and 2009 for non-legacy income were our best ever years, vindicating the trustees’ strategy. However, despite the move to paid staff the organisation exists for and because of its members. The Outreach Project is to reach out to existing and new members who need our help, and to people who can help us. We have made progress raising our profile. The project has already been extended to 18 months. We are seeking funding to extend it. We need to work to improve the way we support our branches. Volunteer Ted Dwyer has been helping us plan how to do this, with several of the Branch Chairs. The next stage is to divide the country into three areas 16
and provide support for the branches in each of those areas, rather than trying to provide support for branches across the whole country with one voluntary liaison officer. DCH expressed thanks to Ted for his work on this and asked all members to support their local branches. Three of the four Members’ elected representatives are continuing and not due for re-election: Steven Jones (Retina International Rep.), Colin McArthur (Volunteer Fundraising Manager), and Carole Holmes, Information & Support Manager. The Branch Liaison position is held in abeyance for the moment pending the finalisation of changes to the way the branches are supported.
Fundraising Activities Challenge-based activities such as treks and runs are now firmly established in our portfolio, continuing with a trip to Namibia this September. Team RP – the London Marathon Team – were provided with more support than ever before and all 15 completed the race, raising a stunning £135,000. DCH asked Roger Backhouse and Ken Reid to stand as representatives of Team RP and accept thanks and applause from the meeting. DCH went on to list briefly many other planned fundraising activities, emphasising that there is a lot happening.
Thanks In addition to the centrally organised programme of events, DCH expressed thanks to the many individuals and groups organising fundraising events for us. DCH also expressed his personal thanks to the staff team in Buckingham for dealing with all the changes we are introducing, and to the board of trustees for their continued support.
Questions Sir Alan invited question to the trustees and Chief Executive. Q: Are materials provided to support events, such as posters? A: Yes, but we do have to be wary of costs. In particular, we will take the suggestion of producing and distributing more posters forward, including making some material available online. Q: Why are AGM (and other) materials produced in small print? A: This material was from the website and so can be made as large as required using a web browser. In general terms we are trying to make all 17
our material fully accessible and believe we have made great progress, especially using the internet, but recognise that not everything is fully accessible to everybody. The website also allows font and background colours to be changed to suit an individual’s needs. Q: What fundraising events suitable for wheelchair users are planned? A: All fundraising events have to be justified financially, many are being piloted still. As plans develop, we can invest further and any plans to develop further events – e.g. for wheelchairs – have to be viable. Q: What became of plans to become a Company Limited by Guarantee? A: This is still on the cards but was deemed by the trustees to be a lower priority than many other activities and has therefore been deferred. Q: Is there a possibility of securing funds from the Olympics? A: Not something we have explored in depth though a member of the Paralympics committee has RP. DCH suspects that such arrangements will be sewn up with sponsors of the event already. Q: What work are we doing or can we do to raise awareness of the charity and of RP in schools and amongst youngsters? A: We want to provide support to people with RP – our services are informational. We don’t have the resources or funds to get involved in providing support or information directly to schools. Full discussion of this point is included in the audio recording of the session.
Close Sir Alan brought the AGM to a close by thanking everyone for contributing, and invited members to bring any further questions to the trustees or to David during the rest of the conference or at any time during the year. The date of the next AGM was also confirmed as 25th June 2011 at Friend’s house, Euston.
Note Please bear in mind that the notes above are the formal minutes of the AGM session and as such are only a précis of the discussions. The full audio recording is available online at www.tinyurl.com/membconf. A CD version is also available on request from the office. There is no charge for the recording but donations towards the costs (about £4) would be very much appreciated. 18
Retina International Conference Stresa, Italy, June 2010 by Stephen Jones, RI Representative The 2010 RI conference was hosted by Retina Italia in the beautiful surroundings of Stresa on the shores of Lake Maggiore. The organisers should be congratulated for arranging a very successful event. The format for the conference followed the usual pattern with the official delegates of each member organisation attending the Continuing Education Programme (24th June) and the RI General Assembly (25th June), followed by two days of the RI Congress (26th and 27th June). The congress was attended by about 600 people, mostly Italians but with good representation from dozens of other countries. Several members of RP Fighting Blindness made the trip, with particularly strong representation from our North West branch. Many renowned scientists, researchers and clinicians, including Prof. Alan Bird and Prof. Robin Ali from the UK, gave presentations. It is now ten years since I attended my first congress in Toronto in 2000, at which time the presentations were about hopes and aspirations that clinical trials would take place at some point in the future. Now, in 2010, most of the presentations were referencing current clinical trials covering gene therapy, pharmaceutical therapy, retinal prostheses, antioxidants and more. Although progress often appears slow, it is clear that considerable advances have taken place over the past 10 years. It is beyond my competence, or the space available, to go into detail about the presentations. Further information is available in the members’ area of our website which contains the official abstracts of all the presentations given in English. Also, Prof. Gerald Chader of the Doheny Institute in California, who has a particular gift for presenting complicated science in layman’s language, has given us permission to use his presentation on our website under the title, “Current and Future 19
Clinical Trials for RD Diseases: What works, What Doesn’t Work and What Might Work in the Future”. Particular highlights of the scientific presentations included Prof. Jean Bennett (Children’s Hospital of Philadelphia) reporting on her RPE65 clinical trial on LCA patients. The successes of the trial were illustrated by a short film of an eight year old boy named Corey whose visual acuity appears to have improved significantly. Dr Koenekoop of McGill University in Canada reported on a clinical trial involving 3 LCA patients using an oral compound to replace a missing protein. After a week of treatment all three had improved visual acuity. The sponsor of the research, QLT Inc, now plans additional clinical trials. Prof Robin Ali gave a fascinating talk on stem cells. Although progress is at an earlier stage than some other avenues of research, he emphasised that stem cells are probably the best hope for end-stage RP patients. He spoke about the use of embryonic stem cells and induced pluripotent stem cells derived from skin cells. Research on mice clearly demonstrates that cell transplantation can work. Weng Tao of Neurotech reported on promising results from the on-going Phase 2 clinical trial of pharmaceutical therapy, CNTF using Encapsulated Cell Technology (ECT) for delivery to the retina, for patients with RP and AMD. Prof Theo Van Veen reported on the clinical trial taking place in Valencia on the antioxidant product which is commercially available under the name Retinacomplex. The product is designed to delay the progression of RP and preliminary findings were described as “positive”. Various speakers, including Dr Roska of Basel, spoke about an area of research known as “optical photoswitches” which was the first time that many in the audience had heard the term. In RP, photoreceptor cells die but other retinal cells, such as ganglion and bipolar cells, remain alive. Research is taking place to find out if a photosensitive protein (a photoswitch) can be inserted into those remaining cells to make them sensitive to light signals.
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The business sessions which preceded the congress were only attended by the official delegates from each member organisation, with David Head and myself representing RP Fighting Blindness. The General Assembly (GA) was attended by 22 member countries plus a number of other countries wishing to become full members. Outcomes of the General Assembly included allowing more than one member organisation per country, approval of new candidate membership for organisations from India, Taiwan, Argentina and Belgium, the re-election of Christina Fasser as President and the election of the RI Management Committee, which includes myself.
It is gratifying for RI to be welcoming new members and to have organisations from other countries expressing interest in future membership. One case worthy of special mention is that of Retina India, which was represented in Stresa by Arvind Bhartiya. Arvind informed us that Retina India now has 1000 members spread across the country. His own estimate of the number of people with RP in India is a staggering 1 million. Clearly it is important for RI to include as many retinal dystrophy patients as possible from all parts of the world and we welcome the important inclusion of India in our ranks. RI congresses are held on a biennial basis and the next one will be hosted by Pro-Retina Deutschland in Hamburg in July 2012. The 2014 congress will be hosted by Retina France in Paris.
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assistive audio and technology.... The Despatch is Hatched The UK-wide registered charity Infosound, in association with the British Wireless for the Blind Fund, now produces a free, monthly audio compilation of information that could be of particular interest to blind and partially-sighted people ... ... WWII Despatch Riders Called the ‘Infosound Despatch’ and usually lasting for about an hour, the monthly selection of audio articles aims to cover a wide variety of different topics about living with sight loss - useful products, leisure, holidays, mobility, housing, employment, money, consumer issues and support services. It is totally free, delivered on standard audio CD to listeners' homes every month, and does not have to be returned. All the charity's other services are only available on their web site (www.infosound.org.uk), so the new monthly Despatch is specifically for vision-impaired people who do not have access to the Internet. Anyone who would like the free monthly service is asked to either phone the lo-call number 084 55 55 55 28 and leave their name, address and telephone number, or to email audio@infosound.org.uk
Digital Voice for Welsh The Welsh Synthetic Voice has been produced by RNIB Cymru to help blind and partially sighted people access information online in Welsh. £80,000 of support for the project came from the Welsh Assembly Government. 22
The Synthetic Voice - or automated speech software - allows you to surf Welsh language websites, as well as download and read Welsh texts, information and books. It opens up access to a whole lot of online content previously inaccessible to Welsh blind or partially sighted people. For information contact: accessibleinfocymru@rnib.org.uk
Listen to Literature Online There is now a large number of online sources for downloading electronic books, magazines and other print material in a variety of formats ranging from plain text to digital audio. Most of this literature is free of charge, but some websites do charge a subscription fee. Many of these books are high quality literature ... ... Some of the main websites are: 1. Alex: a collection of free material from American literature. 2. Audible: 27,000 downloadable books, magazines, newspapers, radio shows, all in the audible.com format. A monthly fee is payable. 3. Bartleby: This site offers the classics of literature, non-fiction and reference books including the complete works of Shakespeare. 4. Bibliomania.com: Free online literature with over 2000 classic texts, fiction, study guides and reference material. 5. Classic Reader: Free fiction, poetry, drama, short stories, non-fiction, and biographies, in HTML format and plain text (no graphics) option. 6. www.4literature.net: This site has more than 2000 books, stories, poems, plays, and religious and historical documents in HTML format. 7. Internet Public Library Books Collection: Includes more than 20,000 online books, magazines, stories, essays, poems, articles, drama and speeches. Materials are provided in plain text and HTML format. 8. Project Gutenberg: Over 17,000 titles available in the public domain, including children’s books. Most books are in text or HTML format. Also foreign language books, recorded music and sheet music. 9. Librivox: This site offers many thousands of classic texts, novels, speeches and similar. All are downloadable in a variety of formats. Source: Retina New Zealand Newsletter 23
Free Computers and Assistive Technology for Kids The Government’s Home Access Team is offering free computers and assistive technology to schoolage children with a learning or physical disability who come from a low-income family. Do you know of anyone who might qualify? Contact the DotComUnity Support Team at enquiries@dotcomunity.org.uk
Don’t forget that if you want to access the Member’s Area of your website www.brps.org.uk, you need to enter the passwork “retina”!
calendar dates calendar dates calendar d Milton Keynes Autumn Theatre Milton Keynes Theatre offers an exciting range of entertainment. Two shows have added accessibility for visually impaired people.
Via personal headphones for blind or partially sighted people, these performances are audio described. Touch tours are also available before them - please ask when booking and mention the charity. Hairspray: Monday 4th October at 7.30pm. By Anne Hornsby. The story of TracyTurnblad, a big girl with big hair and an even bigger heart. The Habit of Art: Friday 22nd October at 7.30pm. Alan Bennett’s latest smash-hit play comes to Milton Keynes from the National Theatre. 24
You can also find the wider programme of musicals, drama and comedy listed at this link: www.ambassadortickets.com/Milton-Keynes. Disabled people are entitled to £5 off for all performances and if you need additional assistance to attend the theatre just let the box office know when booking. Guide dogs are welcome and accommodated in the theatre or can be minded by staff. Again, advise the Box Office when booking on 0844 871 7677.
Events Around the UK Sign Up Now for 2010-2011! ● 11-22 Sep Namibia Project Challenge www.trektofightblindness.org.uk. ● 25 & 26 Sep Stride 4 Sight www.brps.org.uk. ● 26 Sep Run To The Beat ½ Marathon www.brps.org.uk. ● 9 Oct Bombay Dreams (Milton Keynes) Email michelle@brps.org.uk. ● 13 Oct Ophthalmic Open Day Portsmouth Hospital ● 11 Nov Sophie Montgomery Music Evening
Email michelle@brps.org.uk. ● 9 Dec Simply Christmas. www.musicforsight.org or 01908 280800 to book.
● 6 Mar 2011 Adidas ½ Marathon Only 10 Guaranteed Places Email michelle@brps.org.uk. ● 17 April 2011 Virgin London Marathon 16 places available ACT NOW! Email michelle@brps.org.uk. ● 19 May 2011 Gala James Bond Dinner (A London Flagship Event) Email michelle@brps.org.uk. ● 16-23 July 2011 Iceland Trek 30 Guaranteed Places Email michelle@brps.org.uk www.trektofightblindness.org.uk
++ PLUS ++ expressions of interest invited to take part in a Sky Diving Day for RP research in Sept 2011, and trekking in the Falkland Islands in Dec 2012
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New RP Telephone Befriending Service To Launch in October By Sue Drew, Outreach Officer Our new RP Telephone Befriending Service (TBS) is to be launched on 1st October this year. The project idea is simple: to link people who would welcome a friendly phone call from a trained person with experience of RP with a team of willing volunteers willing to share those experiences. The TBS will enhance our suite of Information & Support services, adding to the Helpline, website, Facebook group, publications, branch network and DVD already offered. It offers a social link on a more personal and longer term basis than the Helpline, with regular calls being made by the volunteers for as long as they are welcomed. The scheme will launch following intensive training of the volunteers and will be available to members, though initially it will not be made available to minors (under 18s).* David Head, Chief Executive of the charity, said “The new scheme is a great addition to the services our volunteers provide and will especially help us link with people who cannot get to our meetings.” Carole Holmes and Beryl Duggan, who have been delivering the Helpline with another group of volunteers for many years, will look after the TBS as well. Carole said “The scheme has taken a while to put together while we recruited and trained volunteers, but we have 18 people in place now, of various ages and with differing RP experiences. We are ready to go and I’m very grateful to the group for their help.” If you would welcome a friendly phone call once or twice a month from one of the team, please contact the office on 01280 821334 or by email on tbs@brps.org.uk. The TBS is completely confidential, calls are not discussed with anyone else, no record is kept of the content of conversations and calls can be stopped at any time. * The charity’s volunteers are not currently authorised to initiate personal conversations with minors 26
und raising fund raising fund raising fun from our volunteers across the UK
RUN FOR US! The Virgin London Marathon 2011 Registration is now open for the Virgin London Marathon 2011! If you would like to join TEAM RP for the 2011 Virgin London Marathon please contact Michelle on 01280 821334 or michelle@brps.org.uk. We will provide every support including fundraising materials and a welcome reception (including shower and massage) on the day. Places are limited, so please register early.
Adidas Silverstone Half Marathon 2011 6th March 2011 This classic half-marathon is brought to you by the same great team that organises the Virgin London Marathon. It’s held at the historic Silverstone racing circuit where over 8,000 runners will take on the challenge of the 13.1 mile course. To join TEAM RP for 2011, please contact Michelle Carter on 01280 821334 or michelle@brps.org.uk Registration fee: £20. Minimum sponsorship: £200
See more event opportunities on page 21
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Cycling Success the Length of Britain! Eric Percival and his colleague Sandy completed the Land’s End to John O'Groats cycle ride in June. A massive thank you to you both for raising over £2,300 for RP so far! The duo cycled from Land's End to John O'Groats taking in The Lizard (most southerly point) and Dunnet Head (most northerly point) along the way - a distance of approximately 1000 miles - in only14 days. They survived the gruelling effort laden with heavy panniers, bike hitches and multiple daily cake stops. Eric said, “People were really friendly and helpful throughout. The folks at the Elerkey guest house ... even volunteered to let us cannibalise their son's bicycle to sort my broken rear mech hanger.” You can read more at their blog at http://lejogforrp.blogspot.com.
EYYEE LO OV VE E SIIG GH HT T The ‘Overseas Challenge’ For People Who Don't Do Overseas Challenges! As part of the Isle of Wight walking festival 2011 Linda and Colin Macarthur are organising a walk around the perimeter of the island to raise money for the RP Fighting Blindness research fund. Participants will be walking an average of 12 miles per day, 65 miles in 28
total, from 7th - 14th May. Accommodation will be provided at Whitecliff Bay Holiday Park, Bembridge, Isle of Wight on a self-catering basis. To take part in this great event, which you can make into a fantastic walking holiday whilst helping us fight RP, you will just need to commit to raising a minimum of £500 sponsorship per person. For further details and registration forms please contact Colin or Linda on 01983 406661or email fundraising@brps.org.uk. Alternatively contact Michelle at the office on 01280 821334.
National prize draw 2010 Picture: Member Sean Findlay (age 13)
The annual prize draw was made at the Members’ Conference in London on Saturday 19th June with the following winners. Prize Ticket Winner 1. Holiday in Florida 13460 Mrs Stanley (Leamington Spa) Kindly donated by Steve Carrington. £500 for flights kindly donated by GlaxoSmithKline. 2. Holiday in Bulgaria 3220 Mrs Coffey (Manchester) Kindly donated by Mr and Mrs Farish £200 towards travel costs. 3. Weekend B&B + dinner 12187 Mr Ridge (Windermere) Kindly donated by Vision Hotels 4. £50 Argos Vouchers 13275 Mr Smith (North Lincs) Kindly donated by Mr and Mrs Adamson. 5. £50 Argos Vouchers 7671 J Adamson (Potters Bar) Kindly donated by Brian Rout 6. £50 Holiday voucher 11870 R Pullan (Newcastle) Kindly donated by Harry Shaw City Cruisers.
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Thank you to everyone who bought or sold tickets. This year’s draw made £14,454 with just £933 expenses for licencing, postage and printing. This means that £13,521 will be going to the research fund. _________________________________________________________
branch news branch news branch news b from our volunteers across the UK Yorkshire and Derbyshire David Stevens
East of Scotland Branch Jim McLean
Christine Cooper ran in the Leeds Jane Thomlinson 10,000m and raised £370 for BRPS. Christine ran the race in 1hr 16min - a very good time. The day was a very enjoyable one; but raising so much money made it all the better. A big thank you to Christine and congratulations!
I want to tell you a story, a story of anguish, honesty, disappointment, fighting back and then success!
Jenny Rice of Derbyshire held a "Open Garden Cream Tea Party" and raised £200. Well done! Thanks to Ron and Jean Moulds plus their helpers in two collections at Morrisons Superstores in Bradford which raised a total of £1,400. Hull branch held collections at Tesco and Morrisons in Beverley raising a total of £475. Thanks are due to Elizabeth Stevens and John and Lyn Hoe for this great result.
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A new member of ours, Colin Hetherington, has not just RP but type 3 Ushers. He, like many of us, struggled with the RP, but with great help from his partner kept working very successfully. He eventually felt the need to tell his employers after taking advice from people around him. Strangely enough, quite soon afterwards, his employers were making redundancies and found they had no use for him. Coincidence? Maybe. Being the man he is he fought his corner, took the money and set about building a new life, making
no allowances for his condition. He had an idea to set himself up in business and obtained great help from his local job centre and, more importantly, also from Access to Work. According to Colin, they were superb, giving him encouragement but also practical and financial aid. Now he has his own shop selling paints, wallpapers, decorating material, and so on.
View public house in Hill Head to Lee-on-the-Solent and back. This walk was very popular last year, and there was plenty of activity in the air and on the water to enjoy, as well as the excellent views across the Solent to the Isle of Wight. Everyone is welcome to come along and join us for lunch at the pub from 12 noon and then for the Stride at about 2pm.
Colin wants to bring to the attention of anyone who might make use of them the great support from Access to Work. The team are there to help and did so wonderfully in his case. Of course, we are not all budding Bill Gates but Colin’s story may give heart to others in a similar position. Having RP doesn’t mean you can’t do what you want to with your life. In many cases, you can.
Our street collection season has made a promising start; our first three collections have raised just over £2,000. Very many thanks to everyone who has turned up to shake cans, but we would still welcome extra help at our remaining collections at Bitterne on 11th September and Romsey on 2th October. Please call me.
If you want to talk to the man himself, you can email him at: colhethi@aol.com. Contact me for other Scotland Branch matters at jimuckmclean@hotmail.co.uk.
Hampshire Steve Harris We are holding our ‘Stride for Sight’ on Saturday 25th September and once again we will be striding from the Osborne
Harriet Kinonmonth organized the East Sussex Barn Festival in aid of the RP Research Fund, and this took place on 24 July. We are very grateful to Harriet and her family for arranging such a special event, which was greatly enjoyed by all who attended. If you would like to know more about our Stride for Sight or our collections, or anything else about the Branch, then please call 023 80476894, email hampshirebranch@brps.org.uk or see www.brps.org.uk/hampshire. 31
South Wales Marian Evans Just a couple of brief reminders from Wales this time. A fund raising Xmas Fair is being held at the YMCA Hall at Talog, Carmarthenshire on Friday 26th November, and our Christmas Lunch will be held at “The King Hotel”, Pontardulais on the 12th December. Anyone wishing to attend please ring me (Marian) on 01554 821531.
Dorset Hazel Hart I am pleased to report we are having an excellent year for fundraising, despite the recession. We got off to a flying start with Amy and Helen Gould’s Auction of Promises. This was followed with more hard work by our West Dorset colleagues, Graham and Janet Keen, who organised a very profitable Pub Race Night and then yet another amazing garden party. The weather for the garden party this year was kind and everyone enjoyed a perfect summer afternoon with strawberries and cream, stalls to browse, and live music from Vintage Brass. Janet was frazzled by the end of the 32
day but it was all worth it – thanks Janet! Added to these highlights have been a series of street and supermarket collections both in Poole and West Dorset. So far we have raised £9,000 for the year. Many grateful thanks to all those who have given up their time to assist in these efforts. (Wow ... this is great ... Ed) To increase awareness, Dorset branch wants to hand deliver a letter introducing the Dorset branch of RP Fighting Blindness to local opticians. The letter will tell them about the organisation and its aims and will ask them to help us make any clients they have diagnosed with RP aware of the support the charity can offer. If you can help us with this by providing details of opticians local to you please give Toby or Hazel a ring on 01202 744344. Finally, one of our members has 2 scanners for sale – if anyone is interested in buying at a hugely reduced price, please contact Lawrence Laird on 01258 840422. Devon & Cornwall Julie Allen Cream teas, cakes, stalls and lots of people enjoying themselves were to be found at Edith Gale’s annual July Cream Tea Afternoon. The weather was kind, having
been a little temperamental during the week, encouraging everyone to eat a lot and give generously resulting in over £1,000 being raised. Our gratitude goes to Vera and Sarah for their efforts earlier in the year at the London Marathon. Also, thanks to those of you who have contacted me regarding branch events and how to handover items to be converted into funds. Please keep contacting me at joolsallen@hotmail.com
In Memory Of Geoffrey Maddock By Marian Evans It is with deep regret that we report the sudden death in July, of Geoffrey Maddock. Geoff was a long standing South Wales branch member and husband of Athenia, who was for many years one of our Branch Secretaries. He always worked hard on our behalf. Our thoughts and sympathy go out to Athenia, Aled and Rhodri, their large, close family and many friends.
goods services goods services goods se Five Spice Chicken Here’s a recipe from Maxine’s “Cooking for VIPs”. Marination is one of the many secrets to apply when serving special dishes. This Asian style chicken resting in spices overnight brings flavours to a new level of enjoyment. Serving on a bed of rice along with mange tout will add colour too. 33
Ingredients: ● 1/2 Cup Soy Sauce ● 1/4 Cup Minced Onion ● 1 Teaspoon Grated Fresh Ginger ● 1 Garlic Clove, Crushed ● 3-4 lb Frying Chicken, Cut Into Serving Pieces ● 1/2 Teaspoon Cinnamon ● 1/4 Teaspoon Ground Allspice ● 1/4 Teaspoon Crushed Aniseed ● 1/2 Teaspoon Ground Cloves ● Freshly Ground Pepper Preparation: Combine soy sauce, onion, ginger and garlic in shallow dish and mix well. Add chicken. Cover and marinate in refrigerator overnight, turning twice. Preheat oven to 170 deg C. Drain chicken, discarding marinade. Transfer to a baking dish. Combine remaining ingredients in small bowl and sprinkle over chicken. Bake until tender, about 1 hour, turning once. “Cooking for VIPs” is designed to be accessible for visually impaired persons and is a great Christmas gift idea. You can order the 160 page book for only £12.95 plus p&p. Sales bring the charity a donation of £3.88 per copy. Contact: ssturkington@msn.com or call 01223 246712. ___________________________________________________________________________________________
Christmas Cards One of our trustees, the artist Sophie Birdwood, who has RP, kindly let us use one of her paintings, “River Scene”, for the RP Fighting Blindness Christmas cards. We have a stock of just 200 or so remaining at the office, printed on good quality card, and with envelopes. They are available for a donation of £1.50 each. Please order by emailing or telephoning the office first. If you use the internet, you can read about Sophie and the impact of RP on her as an artist at www.tinyurl.com/34k34d. 34
This year you can again order stickers for your own cards to support our work. These are suitable for any card, not just at Christmas, and you can order batches of 100 stickers for £10 or 50 for £5 by sending your order and cheque payable to RP Fighting Blindness to the office, the address is on the inside front cover. Finally, a reminder that a very wide range of cards is available from www.charitycards.co.uk. We receive a small percentage of the value of your order if you nominate RP Fighting Blindness. This raised over £400 last year and with your support will raise even more in 2010.
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Crossword Competition No. 10
WIN a mystery prize by entering our 10th RP crossword. Send your grid to Members’ Crossword 10, P.O. Box 350, Buckingham, MK18 1GZ Name: ..................................... Tel: .................... Postcode: ..................... Across 8. Inspiring awe (7) 9. Guides (5) 10. Honeybee (5) 11. Bear witness (7) 12. Cry of a goose (4) 13. Wife of a prince (8) 16. Sweat (8) 19. Republic in W Africa (4) 22. Palm seed (7) 23. Injury (5) 24. Martial art (5) 25. Mitigate (7)
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Down 1. Deprivation (8) 2. Scag (6) 3. Crates (5) 4. Superior (6) 5. Shutting (7) 6. Literary ridicule (6) 7. Wan (4) 14. Superficial (4,4) 15. Personal view (7) 17. Retract (6) 18. Go back (6) 20. Entertains (6) 21. Reside (5) 22. Half burnt coal (4)
The winner of the Summer puzzle was AC Hart of Darlington. Answers to puzzle number 9 are available from the office. The closing date for puzzle number 10 is 1st November