The Newsletter of the British Retinitis Pigmentosa Society
In Your Bumper Autumn 2008 Issue No. 128
Letter from the Chief Executive .. .. .. 3 Research Update .. .. .. .. .. 4 Obituary .. .. .. .. .. 6 Branch News .. .. .. .. .. 8 Members’ Conference (AGM minutes) 10 Members’ Conference (Research Session) 12 Retina International Congress Report 15 Retina Awareness Group (RAG) Weekend 18 More Branch News .. .. .. .. .. 19 Trek the Sahara .. .. .. .. .. 20 News from Wales and Scotland .. .. 21 Break The Chain Campaign and Video .. 22 News Shorts .. .. .. .. .. 23 10 Things You Can Do To Help .. .. .. 25 Greeting Card Stickers .. .. .. .. 26 £50 Prize Quiz .. .. .. .. 27/28
"Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns." (George Eliot) Page 1
Newsletter Editors Christine Medway and David Head. RP Fighting Blindness RP Fighting Blindness (also known as the British Retinitis Pigmentosa Society) is a charity dedicated to stimulating and funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP and their families. RP is the name given to a group of hereditary diseases of the retina that lead to deterioration of vision and often to blindness. RP Helpline Members can contact the Helpline for advice or information from 9.30am to 1pm, 1.30pm to 5pm, and from 6pm to 9.30pm (Mon-Fri). Call 0845
123 2354 or email helpline@brps.org.uk
Newsletter This Newsletter is distributed to members of the charity each quarter. Audio copies are available on request free of charge. A pdf version can be downloaded from the members’ area of our website brps.org.uk. Articles for Winter Edition Please note that articles must be received by the office by 1st November for the December edition. Your items are greatly appreciated but some may have to be held over for a later issue if we are short of space. Every effort is made to ensure the accuracy of all information printed but the charity cannot accept responsibility for errors. Office PO Box 350, Buckingham, MK18 1GZ E-Mail: info@brps.org.uk
Tel: 01280 821334 Charity No. 271729
Your Logo Here? Would you like your company or organisation mentioned here? Would you like to contribute an article about your product or work? To sponsor the next edition of this Newsletter email david@brps.org.uk Page 2
Letter from the Chief Executive Dear Members, This autumn will see me complete my first year with RP Fighting Blindness, and what a busy year it has been. What with the significant advances announced by Professor Robin Ali and at the RI Congress in Helsinki, and the changes made by the organisation itself as we approach the final year of the current 5 year strategy, there has been a lot to think about. I’m really pleased this quarter to announce another significant step forward; by the time you read this our new Fundraising Campaigns Manager will have started work with us in Buckingham. Sally Smith joins us from University College London where she has been part of their fundraising team looking after both individual donors as well as organisational supporters. Prior to this she ran a capital fundraising campaign for the Bodleian Library in Oxford, so she has plenty of experience and we are looking forward to exploiting her expertise. Sally will focus, initially at least, on raising funds from charitable trusts, companies and the public sector, but her experience working with donors of all types will be a valuable asset to the organisation more broadly in the future. We are delighted to have been able to offer her this post, it's so important that we get the appointment of our first full time fundraiser right, and I'm sure we have done this. Sally's experience will take our fundraising from strength the strength. It seems that this issue of the Newsletter is particularly full, as there is more and more to tell you about each time we put it together. If you would like more frequent news don’t forget you can sign up for monthly e-mail bulletins and my own blog http://brpsnews.wordpress.com is updated with articles and opinions. Selwyn’s article on research developments on page 4 reflects the ‘exciting times’ we are working in, so here’s to more success in the next few months and until next time, my thanks as ever for your support. David Head MBA, Chief Executive Page 3
Research Update: Gene Therapy Trials by Selwyn Higgins There’s news a-plenty this time, much of it coming from the papers presented by world scientists at this year’s ARVO meeting in Florida, but first an item that marks the end of a long search. Remember our last Lottery grant, which funded a three year project by Professor Shomi Bhattacharya to find a major recessive gene called RP25? At the end of three years’ searching it had not been found although Shomi was convinced it was there. In June he told me that he had found it at last and it does appear to be a find of major importance. Nice one Shomi. Gene Therapy
Anti-Oxidants
One of the “star” papers at the ARVO conference was that presented by Professor Robin Ali. You all know by now of the first successful result in gene therapy for RP, which has featured in several newsletters.
There were also several papers on the subject of anti-oxidants. Over the years there has been evidence that oxidative damage is a factor in retinal degeneration, and in the past year or Prof. Shomi two several animal Bhattacharya trials have shown Although the trial is only beneficial effect from use of antia phase one safety trial, it has oxidants. Natural carotenoids are already shown signs of vision found concentrated in the retina improvement in at least one and it is believed that they act as patient. The plan for the next powerful anti-oxidants. It is still phase is to treat younger patients unclear whether supplements of and there is also the possibility anti-oxidants above those in a that the injected dose will be normal healthy diet are beneficial increased. These trials are for in slowing RP but a clinical study Lebers Amaurosis based upon has now begun in Spain to the RPE65 gene; the types of RP establish this. tried next will depend upon the ability to extract certain healthy Survival Factors genetic material from DNA and successfully take it through the About four years ago I reported lengthy purification processes in on the possibility that rod derived the laboratory. cone viability factor (RdCVF), a Page 4
protein given off by rod cells, was essential to the survival of cone cells. Research suggests that it assists in the defence against oxidant damage, and work is continuing in France with a view to proving that RdCVF can be beneficial when introduced into an eye, with a view to progressing towards human trials. If successful, it could be a means of saving remaining cone cells after the rod cells have died. Another substance that falls into the category of survival factors is CNTF and work has been underway for some time to evaluate its efficacy by introducing it in the form of slow release capsules. Clinical trials on 60 patients are currently underway in USA and no adverse effects have so far been reported. Results of the trials should be available in about a year Autosomal Dominant RP In 1997 we reported work carried out by Professor Humphries to establish how gene therapy could be used for autosomal dominant RP (adRP). The problem is that if corrective genetic material is introduced to an adRP retina, its effectiveness is blocked by the information from the faulty gene, which is dominant. At ARVO Professor Humphries outlined
recent developments in this work; the plan now is to get around this problem by using ribozymes to attack the messenger RNA (which carries information from the gene) and prevent the faulty information from the dominant gene being able to encode a protein. This would allow the therapeutic gene to encode the correct protein. At our own recent AGM we heard that Prof. Bhattacharya is continuing work on certain adRP genes with the intention of achieving this suppression of the information from the dominant gene whilst at the same time introducing the corrective one. This is far more complex than for recessive RP but needs to be pursued with vigour as adRP accounts for around 30% of RP patients. Stem Cells Work is also continuing on using stem cells to “grow� replacement photoreceptor cells. It is a very complex subject but there is evidence to suggest that it is possible to grow rods and cones from stem cells, although no success has so far been reported with human rods and cones. There are serious safety factors to be investigated as some of the materials used are known to be oncogenes (cancerous), so a first human trial is still some way off. Page 5
Artificial Vision Over the past fifteen or so years, there have been many attempts to introduce artificial implants into the retina. Some are attached to the front surface and some between the neural part of the retina and the pigment epithelium. Many problems such as rejection have been overcome but there remains the problem of linking the information from the
‘chip’ to the brain to form a meaningful picture. Much of the work is continuing in USA and Germany. It was reported in the last newsletter that two patients had received implants at Moorfields in London and we still await with interest any further news on these. Thanks to Selwyn for a great and very comprehensive article - Ed
Obituary: George Thompson by Roger Green & Alan Foster Sadly, we have to tell you that George Thompson, our Treasurer for fifteen years, passed away in early June this year following illness. George was born in Lancashire, and spent his school years there. On leaving school he took up an apprenticeship in engineering, experience he was to put to good use later. Having met and married Jo, there followed a period in technical sales during which they chose Tewkesbury as an attractive place to settle with their two sons. George then built a business in high quality engineering in partnership with a friend. Through his combination of skill, knowledge and hard work, the business grew well, eventually being sold as a successful supplier of fine machined equipment. After moving to Tewkesbury, George developed an interest in sailing which was to last all his life. Beginning with a Mirror dinghy, he owned and competed in a variety of racing dinghies, based with the local club on the River Avon. Each year he would take the boat to a variety of National and World Championships, usually at sea sailing clubs and Page 6
often with excellent results. Typically, the family joined in George’s enthusiasm; for many years Jo was a vital part of the sailing club’s race organisation and both boys sailed with distinction. George also served in many capacities at the sailing club including as Commodore. George applied his enthusiasm for new skills to Bridge, playing at both Tewkesbury and Cheltenham Bridge Clubs. It was typical that having taken up the game, he then insisted on playing to the highest level using complex bidding systems requiring an equally skilled partner. Once the boys’ growing independence allowed time in George’s hectic schedule, he took up golf. This provided a mixture, experienced by many, of success and frustration, but this did not dent his belief that golf would yield to work and willpower. Through an industry Golf Society, he played on many fine courses and built yet another circle of friends. Throughout all this time his family remained the constant base to which he could always return, with Jo providing the essential support. In 1993 George responded to an appeal by the Society for a treasurer. His son has RP so he was keen to help our cause. As Treasurer, the amount of work undertaken by George, with the support of his wife Jo, was phenomenal. He looked after our financial affairs on virtually a daily basis and always ensured that our annual accounts were produced as required, all the more applaudable given increasing legislation and accounting rules and bearing in mind that at the same time George continued to run his own business. Those of you who attend AGMs will no doubt recall that he had a most engaging style of presentation when reporting upon the Society’s annual accounts. At our Conference and AGM on 14 June this year, a moving minute’s silence was observed in memory of George. Our sincere condolences go to George’s family.
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News … Branch News … Branch News… News and Views from the Branches From our volunteers across the UK NEW NORTH-EAST BRANCH Ben Pullan The new North-East Branch is up and running! We had our first meeting on 12th July, attended by 17 members and by David Head, our Chief Executive. It was very encouraging and helpful having David there to answer questions. We also discussed a range of possible activities for the branch, and now the new branch committee have gone away to consider these further. The officers of the branch were confirmed as: Ben Pullan - Chairman Les Molyneux – Secretary Paul Bolden - Treasurer. For further information or to join the new branch please contact Ben (0191 236 6369) or Les (0191 431 9410), and watch out for news of branch activities. ~~~ ~~~ ~~~ CROYDON BRANCH Joan Raccagna Just a final reminder that on Saturday 27th September 2008 we have our AGM at the CVAB,
72-74 Wellesley Road, Croydon. Our guest speaker will be Professor Kevin Gregory-Evans. We will start at 2pm and tea and coffee will be served. There will also be a raffle. Please bring old mobile phones, foil, used stamps and foreign currency to be recycled/exchanged for cash. ~~~ ~~~ ~~~ HAMPSHIRE BRANCH Steve Harris This is our last chance to invite you to our 2008 AGM which takes place on Saturday 13th Sept at the Holy Trinity Church Hall, Upper Brook Street, Winchester, starting at 10:30. We will be welcoming Professor Shomi Bhattacharya as our guest speaker. He will bring us all the latest exciting news from the research teams. Please come to what will be a very interesting and encouraging meeting. Our street collection season is progressing well; the three events which we have held so far this year have raised £2,420. Many thanks once again to everyone who has turned out to shake the Page 8
cans. The remaining collections are at Waitrose in Hythe (20th Sept) and Waitrose in Romsey (4th Oct). Any offers of help will be very greatly appreciated. Some of our members have been busy with their own fund-raising events. In July Rita Scott opened her lovely garden on the Isle of Wight and, as well as serving refreshments, she had invited a professional gardener to give advice to her visitors. Maureen Nickless has continued her fundraising in the Newbury area, including another remarkably successful Cabaret Evening. Colin and Linda are still excelling themselves with their many and varied exploits on the Isle of Wight. Many thanks to you all! If you would like to know more about any of the items mentioned above then please phone me on 023 8047 6894. ~~~ ~~~ ~~~ HERTS & BEDS BRANCH Jon Addison In a record breaking 2007 Head Office received over £14,000 from our branch, and we are doing well in 2008 too, so far this year nearly £7,000 has been passed to the research pot, ironic is at a time when numbers at meetings are dwindling.
Our Christmas 2008 get together will be held on 6th December between 1.30pm and 3.30pm at the Wayside Centre in Potters Bar (postcode EN6 5NE for those with Sat Nav or internet maps). It would be fantastic to see both new and old faces there. The meeting is very informal, with a chance to chat to members who have or care for people suffering from RP, over tea and seasonal snacks. We are hoping that our CEO David Head will be attending (it’s in my diary – DCH). Please come along and support us. Contact me on 01707 330140 or at jonaddison66@aol.com. ~~~ ~~~ ~~~ HULL SUB BRANCH David Stevens We have held 5 collections this year, 2 at Tesco’s Stores, 2 at Morrison’s Stores and 1 at the Princes Quay Shopping Centre, raising £1038. I would like to thank those members who were able to help at the collections. If you can place a collection box please let us know - a box at my wife’s workplace collected £42. If there are any other members in the Hull area that can help then please ring on 856040. Page 9
Minutes of the 32nd Annual General Meeting of RP Fighting Blindness The formal AGM of the charity formed one of the sessions at the Members’ Conference in London on 14th June. These minutes are presented to all members and will be formally approved at the next AGM. Chairman’s address The deputy chairman of the Board of Trustees, Roger Green, welcomed about 200 members to the 32nd AGM. Apologies had been received from Sir Alan Rudge. The minutes of the 2007 AGM, published in the autumn newsletter, was agreed by all present to be a true record. Roger referred to the Trustees’ Annual Report highlighting several areas. Mary Guest, one of the original Trustees, had retired in 2007, Roger reminded members of her dedication and long service, particularly in welfare and her work with Sense. He also paid tribute to our former treasurer (1993-2008), George Thompson, who had died earlier in the month. This was followed with a moving minute’s silence. The 5 Year Plan reached a landmark in 2007, when our new CEO David Head took up post. David has taken on chairing the Management Committee (MC), which has inevitably meant some change. Clive and Anne Fisher, and Mireille Portlock, all stood down from the MC and their valuable contributions were acknowledged by Roger. Roger went on to thank the office team, the MC, Helpliners, branch officers, members and donors for their support during 2007. The full Trustees’ Report is published on the website and is available in print. Roger went on to introduce our new treasurer, Henry Bennett, who moved onto the Finance report. Financial Statement Henry presented highlights of the audited accounts, also published on the charity’s website and available in print. He also made 2 proposals. - that we continue the services of the current auditors for 2008 - that the CEO be a cheque signatory (along with one Trustee). Page 10
These were both approved unanimously by members present. The Chairman then proposed that the Trustees’ Report and Accounts were formally adopted by members, which again was unanimously approved. Chief Executive’s Report Roger introduced the Chief Executive David Head who spoke about his role and the future of the Society. David outlined some of the rationale for recent change, in that in the current tough financial environment many charities are competing for funds, and in order to compete it is no longer enough to be purely voluntary, especially given that clinical trials are so expensive. He described some recent activities, especially improvements in communication, the member’s survey, fundraising opportunities over the last few months (underlining our need for our new full time fundraiser), the review of the website and other material using RP Fighting Blindness rather than BRPS, and the launch of a new campaign to “Break The Chain” of inherited blindness. David said that the MC remains an important forum and took the opportunity to tell the meeting of 4 nominations that had been received for the 4 elected posts available this year. These were Stephen Jones (Retina International), Christine Medway (Information & Support), Linda McArthur (PR) and Kevin Johnson (Branch Affairs). Here the Chairman asked for approval of these elections which was given unanimously. David concluded with his aspirations that the charity (1) continues to influence and drive the research agenda (2) becomes more recognisable and known (3) increases income and investment in research significantly and (4) attracts more members by continuing to provide good information and support services. The Chairman thanked all present and closed the formal session. Information and Support Christine Medway, Information & Support Officer, spoke briefly about changes in the charity’s welfare area. As part of her newly defined role, she would like branches to invite her to meetings during the year. She expressed thanks for the hard work of Steve Goulden, previously Helpline Manager, and Brian Lay, previously Welfare Manager. Carole Holmes is the new Helpline Manager and plans for the Helpline Training Weekend in Blackpool are in place. As a result of the members’ survey there are several volunteers about to undergo training. Page 11
Members’ Conference Research Session By Christine Medway At the member’s conference this year our keynote speaker was Professor Robin Ali, who has been leading the gene therapy clinical trials at Moorfields Eye Hospital. The session was chaired by our own Professor John Marshall; also on the panel were Prof. Robin Ali, Dr. James Bainbridge, Prof. Shomi Battacharya and Steven Howarth, RP gene therapy patient. Prof. Marshall started by giving an overview of the journey to the recent breakthrough. Prof. Ali then gave the main presentation. He shared the delight felt about the results of the Phase 1 gene therapy trials. He defined gene therapy as the use of a benign virus to deliver the good gene into the retina. The challenges to overcome had included how to be most effective and not harmful, and deciding which form of RP to attempt to treat; RPe 65 (Leber’s Congenital Amaurosis, a recessive gene type) had been chosen as the best candidate to attempt the therapy partly because, though rare, it had already been the subject of successful trials in dogs in the USA. In 2004 the Department of Health gave funding for this project but it took over two years to get the paperwork in place and permission to go ahead. In February 2007 we became the first country in the world to undertake human trials. Prof. Ali reminded us that these trials were primarily to test the safety of this form of therapy. Three young adults have been treated and are being monitored for at least 18 months. Possible complications might have arisen because of the fragility of the retina, a negative immune response or due to the surgical procedure itself. However, none of the patients developed any complications, and Steven Howarth showed significant improvement in his night vision.
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Future plans include the treatment of younger patients with an increased dose of gene therapy – the Phase 1 safety trial used a relatively small amount in one eye only. Implications Prof. Ali went on to outline some of the implications for the future. This is the first time that any gene therapy has been shown to be effective and it opens the way for great progress for lots of genetic conditions. It will lead on to the possibility of therapies that will conserve existing vision for people with RP, though it cannot treat the cells that have already died. It is important to remember that it will take some time to develop these therapies and will require a much higher level of funding. Prof. Ali summarised by saying that we can celebrate huge progress. There has been fantastic work from Prof. Bhattacharya, who located the first RP gene, Dr. Bainbridge who was the surgeon, Prof. Tony Moore, and many others who have all contributed, not least the families and patients concerned, researchers worldwide and RP Fighting Blindness! At this point there was a very understandable standing ovation. Prof. Marshall then invited questions from the floor; Q. Where does the gene come from that is used in gene therapy? A. It is not identified from any particular individual, but is from a blood sample. One gene is taken from a single cell and processed in the laboratory, before being duplicated. Q. Why was a larger amount used in the UK trial than in the US? A. We wanted to be able to manipulate the material injected into the peripheral area of the retina and move it to the central area. Q. Didn’t a patient of the trial in the USA develop complications? A. The retina is delicate tissue. The complication in the US trial was a minute hole, but this appears not to have caused visual disturbance. Q. Steven Howarth was asked - Was it painful? A. There was some discomfort, but it wasn’t too painful! Q. What about people with other syndromes, such as Usher’s? A. LCA (RPe65) just happened to be an excellent candidate to start with. This is just the beginning, more will follow. Q. Will gene therapy always be administered using a virus as a surgical procedure and will further treatment be necessary? Page 13
A. Using a virus is envisaged for the foreseeable future. We don’t know whether more treatment will be needed, but animal models have shown the therapy to be stable without needing more. Q. Should RP sufferers have genetic tests? A. Yes, though not all RP genes have been located and so tests may not be conclusive. Genetic screening is an expensive exercise. The charity has helped to fund the clinic in Manchester headed by Prof. Black but this cannot handle large numbers of requests. On the plus side, new and cheaper screening technology is improving the situation. Q. What if the condition is already quite advanced? A. The belief is that the earlier treatment can be administered the better, as generally the younger the patient the better the chance of success. LCA has an early onset which made it a prime candidate for the trials. Q. There were 2 other patients treated on this trial, how are they? A. Too early to say for certain, but we are not confident enough to say there has been an identifiable improvement. Q. There has been some work going on for dominant RP, are we any nearer to therapy for this? A. Yes, there has been some progress in the last 5 years, but it’s a more complex problem in that there are normal and mutant proteins expressed in the photo receptor cells. Treatment would need to suppress the mutant protein expression and also supply normal protein. Q. How long before Usher’s Syndrome might be treatable? A. Several Usher’s genes have already been identified. A recent study has looked at issues of hearing loss, balance, and retinal function and the data is to be analysed over the next year. Q. How useful has the human genome project proved to be? A. Incalculable, it has underpinned the science behind our work. Prof. Marshall concluded by thanking the panel and audience.
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Retina International Congress – 1st to 5th July, Helsinki. Stephen Jones, Retina International Representative This was another excellent conference; the highlights being an extremely well received presentation by Professor Robin Ali and news on several fronts about clinical trials in progress or planned. RI continues to grow its membership and activities and the gathering was, all in all, a very good 30th anniversary for the organisation. The programme consisted of: Tues: Continuing Education Programme (CEP) for delegates only Wed: RI General Assembly for delegates only Thu: RI Management Committee meetings Fri/Sat: Main open RI Congress at Finlandia Hall After the understandably low British attendance at the last RI conference (Rio 2006), there was a good turnout in Helsinki with five members on the youth programme and at least seven others attending the main events, including David Head and myself as the official delegates. Also, two British scientists figured prominently in the programme, Robin Ali and Professor Alan Bird, who received a special award for his long association with the organisation.
The grandly named General Assembly is the place where the business of RI is done once every two years and where decisions are made. Limited space precludes giving too much detail here but some of the key points were as follows: 1. The number of full members of RI is 23 but there are over 20 other societies associated and several applications were received including Iran, Iceland and Taiwan. There was debate about
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whether RI should allow more than one member organisation per country, particularly from large countries such as China. 2. RI has a brand new website (www.retina-international.org) which is an important milestone in RI’s efforts to expand its information dissemination role. 3. It was agreed that the 2010 conference will he hosted by Retina Italy and the 2012 conference by Pro-Retina Germany 4. Christina Fasser was re-elected unopposed as the President. Her enormous contribution to the work of RI was recognised. A Management Committee of seven was elected. I allowed my nomination to go forward, having declined in earlier years, and was duly elected. The term of office is two years. As always, much of the most interesting discussion took place in the lunch and coffee breaks. Picture the scene – representatives from the USA, Iran, Pakistan, UAE and Israel in deep conversation about promoting the interests of retinal dystrophy sufferers. There was a strong emphasis in the main Congress on research and clinical trials. Whilst there were some workshop sessions on welfare issues, these were particularly targeted at the large Finnish audience. Here are a few of the highlights from the Congress: Robin Ali spoke on gene therapy on the final afternoon to a rapt audience and showed the film of Steven Howarth in the darkened maze. He also explained that the Moorfields clinical trial is one of three trials currently on-going. The other two RPE65 trials (Bennett and Jacobson) are taking place in the USA. Robin paid tribute to the funding he has received over the years from patient organisations and made mention of RP Fighting Blindness. Alan Bird gave a very upbeat assessment of the history of research leading to the current clinical trials. He also outlined what Europe needs to be prepared for further clinical trials, emphasising the importance of collaboration to develop patient registries. Page 16
Mark Humayun, from the Doheny Institute, California, spoke about his work on retinal prostheses and the clinical trial being run in conjunction with the company Second Sight. So far 20 patients have been implanted with the Argus II device in various countries and more will follow. This trial is partly being undertaken in London and we participated in an information day early this year. Weng Tao of Neurotech spoke about a clinical trial being undertaken with the growth factor CNTF using Encapsulated Cell Technology (ECT) for both RP and AMD patients. Work is ongoing in 11 centres and results will be announced in early 2009. Theo Van Veen presented his work to show that antioxidants can slow photoreceptor cell death in animal models of RP. He did not emphasise the commercial product Retinacomplex except to say that a human clinical trial is on-going in Spain. However, there was much talk around the conference about this product and some delegates have purchased the capsules. Jerry Chader, again of the Doheny Institute, did his usual job at RI meetings of summing up current research in understandable layman’s terms. Jerry has given permission for his paper to be circulated and is available by email on request to the BRPS office. It was appropriate that the 30th anniversary of the organisation should be celebrated for the first time with encouraging results from clinical trials. The sense of optimism was palpable and, as always, there was a wonderful atmosphere amongst all participants. A limited number of copies of the Congress Programme are held at Buckingham office and can be posted on request.
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RAG 21st Annual Blackpool Weekend Nicole Woodin and Howard Leicester
The Retinal Awareness Group (RAG) is holding its landmark 21st Blackpool Weekend from Friday 24th to Sunday 26th April 2009 at the Carousel Hotel. The keynote speakers will be Professor Tony Moore, a world expert on retinal dystrophies from Moorfields Eye Hospital, and Dr John Gill, Chief Scientist at RNIB. The cost of the weekend per person is: Double or twin room £115 Single room £125 Single in double or twin room £135 For more information phone 0207 794 9502 or send an SAE to Mrs Nicole Woodin, 17c Downside Crescent, Belsize Park, London, NW3 2AN. You can also phone Carole Holmes, our Blackpool contact, on 01253 404194 or email Howard at h.j.leicester@city.ac.uk. To book please contact the hotel directly, stating "RAG Weekend". The Carousel Hotel is at 663-667 New South Promenade, Blackpool, FY4 1RN and the phone number is 01253 402 642. Our contact at the venue is Claire.
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News …More Branch News … More Bran News and Views from the Branches From our volunteers across the UK MIDLANDS BRANCH Steve Hollingsworth Hello from Midlands Branch and this is my first Chairman’s message. First of all I’d like to say a big thank you to Rita Nicholls for her 11 years as Chair of the branch. We all wish her well for the future and look forward to seeing her still at branch meetings. Rita will continue helping us with our raffle, cartridge recycling, agents lists and lots more. For those of you that don’t know I am Steve Hollingsworth, husband of Bev who many of you will know, and father of Justin, who is 11 years old and has RP. I became chair of Midlands Branch in June and I plan to carry on our good work, so please can I ask everyone to continue supporting each other and raising funds to halt tragic loss of sight.
the RP team in the “Trek the Sahara” adventure and we have agreed to act as guides if any visually impaired people need help on the trip. (www.trektofightblindness.org.uk) We are also re-launching our recycling campaign, which to date has raised over £2,300 for the branch. If every branch and member helped, this could be many thousands more, so please contact either Bev or myself about your old phones and printer cartridges; we can provide you with freepost envelopes that will ensure they are properly recycled and that we get a donation in return. We can be contacted on 07778 290606 (Steve) or 07779 035170 (Bev) or bev.hollingsworth@ btinternet.com.
We have had a very busy year with Steven Howarth’s story and the launch of the ‘Break the Chain’ campaign, which you can read about in this Newsletter and hopefully will see in the wider media. Bev and I are also joining Page 19
ESSEX & SUFFOLK BRANCH Steve Carrington. Hi again everyone, I hope you all had a good summer? I must say I really enjoy the lighter nights, but not necessarily the brighter days sometimes! Our Stride for Sight on August 3rd had a reasonable turn out and nearly £200 was collected along the way too. Well done to all who took part this year. I’m sorry I missed it this year guys. Info on sponsorship money raised will follow folks. Thanks again to Margaret for your hard work in organising it and also Ted for his assistance too. Also a big well done to Steve and Brenda Mason’s son Paul for his incredible sponsored bike ride at the start of the summer from the top to the bottom of the UK. I understand over £4,000 was raised, WOW! Well done Paul! ~~~ ~~~ ~~~ YORKSHIRE & DISTRICT Richard Padmore At our AGM in April this year it was agreed to do our annual "Stride for Sight" across the Humber Bridge. The last time we walked it we raised over £4,500 for the research fund. This year’s walk will take place on Sat 27th September. We'll be meeting in the car park at the north side of
the bridge at midday and starting across at 1pm. It would be great to see more of our members at what is our main fundraising event. For more details and sponsor forms please email (richandkay@gmail.com) or call (01709 700198). (Editors note: I’ve walked across the bridge before, it’s a great experience and a wonderful piece of civil engineering … well worth the day out … DCH) Sahara Desert Trek March 2009 David Head
An update on our very first overseas ‘charity challenge’ - our trek in Morocco next March. Gene therapy patient Steven Howarth has signed up for the trip, and we have now reserved our flights to Morocco. Plans are going well and it’s very exciting. We still have places available but these are now filling, so if you would like to join us, or can encourage a family member to, email me at sahara@brps.org.uk. Page 20
ews … Wales News … Scotland News… Letters from Wales and Scotland by Marian Evans and Lynn Barr Our first meeting in Pembrokeshire was held at Fishguard on 22nd June. It was a great lunch and a lovely venue, and it was so nice to see some new faces attending. We thank Audrey for making all the arrangements, and we now hope to do the same next year. Many congratulations are due to our Branch Chairman, David Morgan, who was awarded the Queen’s Police Medal in the Birthday Honours List for his distinguished service as a Police Officer for 25 years. He will receive the award from Her Majesty later this year. Here are two dates for your diaries: A meeting and lunch will be held at the Ivy Bush Hotel in Carmarthen at 12.30 on Sunday 28th September. (to attend please telephone Heulwen Howells on (01994) 484206), and a Christmas lunch will be held at the Con Club in Neath on Sunday 14th December (please contact Athenia Maddock on (01639) 776498). All the best, Marian We are still alive and kicking in West Scotland, we had our AGM in March with a good turnout of regular and new members - it was good to see you all. The officers and committee agreed to stay on for another year and our Treasurer, Marion Renfrew, informed us that we had sent £12,703.50 to the Research Fund in 2007 from sponsored events and donations. So far in 2008 we have sent £14,558 of which over £13,000 was from a legacy. Our meeting in June was a social and once again we had a good turnout. £600 was donated and we are very grateful to all who contributed. Our next meeting will be on 4th October at 2pm in Quaker House, Glasgow. David Logan from Visibility will be our speaker at this meeting. So a good turnout would be much appreciated. Ann Stewart will contact members by telephone or email to confirm details. Best wishes, Lynn Page 21
Break the Chain Campaign and Video from the Head Office Team On June 21st we launched a new fundraising and awareness raising campaign entitled “Break the Chain”, all about the need for us to break the chain of RP through generations of the same family. We used a member family, from Warwickshire, to illustrate how a gene flaw is carried from generation to generation and can affect people of all ages. The campaign was launched by John Bercow MP and with the support of ‘Strictly Come Dancing’ star Louise Lytton. We will be using it increasingly in our appeals over the next year or so. We have also been able to secure permission from Elkie Brooks to use her song “Break The Chain” to raise awareness of the campaign. A video is available online showing some of our work alongside the song. We are very grateful to Elkie Brooks, one of the great female vocalists of our time, for her support, and it’s a great, catchy song. If you have access to the internet you can see details of the campaign on our website www.brps.org.uk (follow the ‘fundraising’ link). You can see a small version of the video on the website too, or the full size version is at http://tinyurl.com/6fwjjb, where you can also leave your comments or messages of support. Finally, if you would like a copy of the campaign flyer please ask the office.
Your Logo Here? Would you like your company or organisation mentioned here? Would you like to contribute an article about your product or work? To sponsor the next edition of this Newsletter email david@brps.org.uk Page 22
News Shorts! Hot Rod Collections Our collections at the Classic Hot Rod race meetings are going very well, where we are the nominated charity of the year for 2008. The last meeting is on 27 September in Birmingham where we still need a couple of volunteer collectors. If you fancy a day at a motor racing event and can help us please contact the office. Special Thanks Occasionally it is appropriate to thank individual members for their fundraising efforts. Ken and Margaret Walmsley from Crewe have raised over £3,000 including from collections they have organised themselves, and by securing a £1,000 donation from an individual (who wants to remain anonymous). Thank you both very much from all who are working to find a cure. Newsletter Editor Our Newsletter Editor Christine Medway has now stepped down and has taken up the role of Information and Support Officer working with the Helpline team.
Consequently an opportunity exists for a volunteer to join the Management Committee as Editor. If you think you might like to take this on, please email David at david@brps.org.uk. The Newsletter Editor needs to work with contributors and liaise with our printers and distributors. Four meetings each year are held in London with expenses paid. Facebook Group Reaches 400 For those of you with access to the internet and an interest in ‘social networking’ sites, we have created a RP Fighting Blindness group on Facebook which is proving very popular, attracting over 400 members already, from around the world.
To visit the group just go to www.facebook.com where you can sign up for free (or sign in if you are already a subscriber). You’ll find the group by searching the site for “Retinitis Pigmentosa” but call or email the office if you have any problems. Page 23
News Shorts! Annual Prize Draw Winners of our main Annual Prize Draw were announced at the Members’ Conference in June. The draw raised over £12,200 and the main winners were:
to provide information and increase awareness of RP. Our intended audience at the event ranges from the newly diagnosed to teachers and care workers interested in broadening their understanding of the condition. It is always great to see familiar faces and meet with members from across the country. This year there was no shortage with visits from a number of branches. For more information visit www.qac.ac.uk/sightvillage Recruiting
Holiday for 2 - Mr Parrish, Essex £100 voucher - Ms Milne, Glos £100 voucher - S Allard, Hereford £100 voucher - Mrs Saunders Event Tickets - Mrs Pryor Zookeeper Day - M Roddie Jewellery - ‘Kevin’ from Radlett “Sight Village” Birmingham Chloe Scaplehorn Sight Village is an exhibition held every July in Edgbaston. With hundreds of stands it is a great place to get hands on information on organisations, the latest visual aids, and associated technology. This year the event was as successful and as busy as ever. RP Fighting Blindness has been attending the event for a number of years as part of our campaign
RP Fighting Blindness is recruiting two new members of staff, an Events and Volunteer Coordinator to work with Colin McArthur and our voluntary fundraisers, and a part time Book-keeper to help look after our increasingly complex financial accounts. We hope to make an announcement regarding both appointments in September.
The current team Barry, Kate, Margaret, David Page 24
10 Things You CAN Do To Help Us and WIN a T-Shirt (and they won’t cost you a penny!) Fundraising can be hard work. It can be difficult to make a contribution to the Research Fund as often or as much as you would like. Well here are 10 things you can do to help us that won’t cost you anything, and if you write and tell us you’ve done all 10, we’ll send you a T-shirt as a big thank you! 1. Let us recycle your old mobile phones and printer cartridges, call Bev on 07779 035170 for a FREEPOST envelope, it’s that easy. 2. Use your email and send a link to the Breaking The Chain video to 20 people you know, and ask them to make a donation AND pass it on if they like it. The link is http://tinyurl.com/6fwjjb. 3. Collect together all your old foreign coins and get them to Head Office through mutual contacts and meetings. 4. Amend your homepage and search page on your PC so that you use EVERYCLICK every time. Follow the EVERYCLICK link from our site www.brps.org.uk to set this up. We’ll then get paid each time you use it! 5. Mention RP Fighting Blindness in your Will, and ask family members to do the same. If you do this when writing a Will there are no extra costs to include a charity in your legacy arrangement. 6. Buy some of Gillian’s Christmas card stickers (see page 26). OK it’s not quite free, but it’s a lot cheaper than buying expensive charity cards in a supermarket, and the money comes directly to the Research Fund. 7. Ask us for a collecting tin and arrange for it to go onto your local opticians counter, or onto the bar of your local pub. All you’ll have to do is be prepared to change it when they tell you it is full. It’s easy! 8. Ask us for 10 copies of the “Friends of RP Fighting Blindness” leaflet and send or give them to 10 of your colleagues or friends (with a gentle suggestion that they might like to sign up, of course.) 9. Buy your birthday or Christmas cards at www.charitycards.co.uk and nominate us to receive the royalty payment. 10. Sell your unwanted items online at Ebay and nominate RP Fighting Blindness to receive a percentage of the selling price, it’s all automatic. Page 25
Christmas Card Stickers Hugely Successful By Gill Eastwood In the last Newsletter, we offered stickers to attach to your birthday or Christmas cards, as a more effective way of making a donation than buying charity cards from the big retailers, where sometimes very little of the price actually reaches the named charity itself. Our first batch of 10,000 stickers sold out really quickly so we are printing another 10,000 ready for Christmas orders. The stickers are available again at a cost of £5 for a set of 100, or £3 for a set of 50. Every sticker sold helps the Research Fund by a few pence. Why not order a set now for your Christmas cards? Send the form below to the office or contact me (Gill Eastwood) on 01923 773073 or gilly5@tesco.net to order in plenty of time for Christmas.
Send this page (or a copy or handwritten order if you prefer) to Sticker Orders, RP Fighting Blindness, P.O. Box 350, Buckingham, MK18 1GZ. Name and Address............................................................................. Postcode.........................................Tel No ……………………………. Please send me ……………….….. Birthday/Christmas card stickers Cash/cheq is enclosed for £ ……..… paid to ‘RP Fighting Blindness’ Page 26
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Win £50.00
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The RP Fighting Blindness Quiz Competition Instead of a crossword this quarter, we are pleased to invite you to enter the Midlands Branch Autumn Quiz. Simply send your entry to the address overleaf, not forgetting to put a £1 coin in the envelope! The winner of the Summer Crossword Competition was Sheila Brierley who is now the proud owner of a Bierley Monomouse. Quiz Questions You can remove this page to send us your answers Who was the British monarch during the American War of Independence? “Aunt mors sweeper” enjoys a holiday at the seaside? Who uses a galley but might not be a cook? Which seabird native to Britain was extinct in 1844? Who played Mrs Garnett in ‘Till Death Do Us Part’? Which London building stands on Newgate Prison site? Margaret Hookam was the birth name of which British ballerina? ‘Bird’ was the nickname of which West Indian cricketer? Who designed the coronation dress for Elizabeth II? Name the many-headed dog of Greek mythology? Which comic partnership starred in the 1942 film “Rio Rita”? Which bird first seen in the UK in 1955 is now present in many gardens?
What were the Forty Niners in 9th century California? In which southern ocean is Tristan de Cunha? What is the fruit of the blackthorn? Who scored England’s only try in the 2003 rugby World Cup Final? “Swallows & Amazons” is set where in the UK? What or who is a Boomslang? Which king in 1215 was forced to accept the Magna Carta? Who was the turbulent priest Henry II wished to be rid of? Page 27
Quiz Questions continued from P27 You can remove this page to send your answers What is the most plentiful gas in the universe? The musical “Cats” is based on poems by whom? Which monarch did Guy Fawkes intend to blow up? What is the date of St Andrews day? What is a Bombay Duck? What were first used in Wolverhampton in 1928? How many planets orbit between Earth and Sun? The Gas St end is found at which cricket ground? What is the principal grain used in Scotch Whisky? What was the biblical name of the Promised Land? Which fruit flavours the liqueur Grand Marnier? A derrick is an example of what heavy machinery? How many players in a polo team? What is the name of the juice of the pomegranate? Which sport uses stones and houses? What type of insect is a black darter? In which UK city was the film “The Full Monty” set? Which country’s currency is the Forint? What is studied in the science of Oology? Who wrote the music for the film “Schindler’s List”? How many Old Testament books begin with J? The church with a twisted spire is in which county? In which year did Concorde make its first flight? What is the common name for Nitrous Oxide? Which crime writer created Det. Inspector Wexford? What colour is the black box recorder in aircraft? What vegetable is used in Eggs Florentine? By what name is a fear of heights known?
All proceeds to the Research Fund. Send you answer sheet to Lorna Sage, 1a Blythesway, Alvechurch, B48 7LU. The closing date is 15th November. Name …………….........… Postcode ………………Tel …………….... Tick
I have enclosed £1 as my entry fee Page 28