The Quarterly Newsletter from the British Retinitis Pigmentosa Society In Your Winter 2008 Issue (No. 129)
Sophie Birdwood Christmas Cards .. Membership Renewals .. .. .. Letter from the Chief Executive .. .. Research Projects .. .. .. .. Patient Information DVD .. .. .. Branch News .. .. .. .. .. TEAM RP .. .. .. .. .. .. Can you Help Sally? .. .. .. .. A View from the Emerald Isle .. .. Where There’s a Will There’s a Way More Branch News .. .. .. .. Retinitis Pigmentosa and Driving .. News Shorts .. .. .. .. .. The Radio 4 Appeal .. .. .. 22 Of Dogs and Divas .. .. 23 Bits and Pieces .. .. 25 Win £50 .. .. .. 26 Trekking .. 28
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Christmas Cards from the Head Office team One of our trustees, the artist Sophie Birdwood, who has RP, has kindly donated one of her paintings, “River Scene”, for us to auction next year as part of a fundraising event. We thought it would be nice to use the artwork for this year’s RP Fighting Blindness Christmas cards. We’ve only had 1,000 printed, so they are quite a limited edition and will be distributed on a first come first served basis. They are printed on good quality card, come with envelopes and are available in return for a donation of £1.50. The minimum order is 5 cards (£7.50) and the maximum is 50 (£75.00) per person. You can order using the form opposite (or by letter if you don’t want to spoil your newsletter) and cards will be sent by first class post. If you use the internet, you can read about Sophie and the impact of RP on her work as an artist at www.tinyurl.com/34k34d Don’t forget, you can also still order stickers to go in your own cards to support RP Fighting Blindness. They are suitable for any greetings card, not just at Christmas. Batches of 100 are available for a donation of just £5.00 using the form opposite.
Finally, a range of cards is available online at www.charitycards.co.uk. We receive a small percentage of the value of your order if you nominate RP Fighting Blindness when you buy. Thank you for your support. 2
Membership Renewals Membership subscriptions are now due for 2009. If you normally renew your membership by cheque the fee is £15.00. Please send payment as soon as possible as this helps with our cash flow and saves us time printing and posting reminders later. You can remove this page to use the form below (and order Christmas cards too!) If you are willing to make a further donation this would be appreciated. Contributions of any amount to support our work are very welcome. We are dedicated to funding research into treatment for RP. We also provide support and information for people with RP. Members can contact the Helpline on 0845 123 2354 or at helpline@brps.org.uk. Members receive this quarterly newsletter, which can also be downloaded from the members’ area at www.brps.org.uk (password ‘retina’). PO Box 350, Buckingham, MK18 1GZ E-Mail: info@brps.org.uk
Tel: 01280 821334 Charity No. 271729
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Letter from the Chief Executive Dear Members, Christmas is nearly upon us, so let me open this edition of the Newsletter by wishing all of our members a very Merry Christmas and a Prosperous New Year. This last quarter has been a very busy one for us all at the office in Buckingham. Not only have we had three new members of staff start work for us, but we have expanded into the office adjoining what has been our home for the last few years. As those of you who keep in touch via the email news bulletins and my blog will know, there are eight of us in the team now, three of us working full time and five of us working part time. In this quarter our trustees approved funding for three exciting new research projects. One of these has been fully funded by a large grant from the Big Lottery Fund, the other two have been funded for the first year from our own Research Fund; we are approaching other organisations now to try and secure co-funding for the second year. There is more news about all of this later in this newsletter. Fundraising activity is on the up and up too. Michelle has launched “TEAM RP”, which is attracting runners from all over the country to take part in three events next year. A second trek is planned and several other exciting events will be announced soon. These are designed to appeal to members, but also to attract new supporters to RP Fighting Blindness and make more people aware of RP and our work. Talking of raising awareness, please be sure to listen to Radio 4 on January 11th, when we will be featured on the Radio 4 Appeal. Again, more news about this later in this issue. Finally, we are experimenting with colour printing for the outer pages of this edition. Do let me know what you think, as we are anxious that your newsletter is as easy to read as possible. If you would like more frequent news don’t forget you can sign up for monthly e-mail bulletins. As ever, my thanks for your ongoing support. David Head MBA Chief Executive 4
Research Projects from the Trustees At the board meeting in October funding was approved for three exciting research projects, committing over ÂŁ600,000 over three years and demonstrating our ongoing commitment to the search for a cure for RP. The grants have been possible because of increased traditional fundraising this year, the large legacy we were left last year and a successful bid to the National Lottery through the Big Lottery Fund. Professor Robin Ali
Dr Andrew Webster
We are delighted to have agreed funding to allow Professor Ali to extend the human clinical trials of gene therapy at UCL/Moorfields Eye Hospital for a further two years. In conjunction with funding from the Department of Health this will also allow the trials to be extended to younger patients; approval has been given to operate on children as young as five.
The second grant is for a team led by Dr Andrew Webster, again at Moorfields Eye Hospital. The project will further his work analysing DNA from retinitis pigmentosa families, in particular families in which consanguineous marriages (cousin marriages) have occurred. The incidence of RP is much higher in such family groups; these tests and analyses are expected to lead to the identification of additional gene flaws which cause autosomal recessive RP.
Members will all know of successful results announced earlier this year. The plan for the next phase is to not only treat younger patients but also look at increasing the injected dose. The trial is again for Lebers Amaurosis, but discussions have been started regarding further funding to broaden them out to other genes. We hope to have more news about this in 2009.
The board was particularly pleased to have received bids for funding from two researchers known well to us and for very good projects. Both scientists have produced excellent results from projects funded by us in the past and there is no reason why this should not continue. 5
Professor Mike Cheetham Thanks in no small part to the work of contracted Development Manager Stephen Jones, RP Fighting Blindness has been awarded a Big Lottery Fund grant to work in collaboration with London's UCL Institute of Ophthalmology to investigate potential treatments for RP.
Professor Mike Cheetham
We are working with Professor Mike Cheetham and his team on a new project looking at the potential for advanced drugs, already approved for the treatment of other conditions, to arrest the deterioration of sight in people with RP. RP Fighting Blindness is funding the research following an award of over £247,000 by the Big Lottery Fund, a fantastic sum. David Head, Chief Executive said: "We are proud to collaborate with UCL Institute of Ophthalmology and Moorfields Eye Hospital, which together form a world renowned centre for eye research, and we are extremely grateful to the Big Lottery Fund for their support, without which
we would simply not have been able to fund the project.” Prof. Cheetham added; “The research funded by the Big Lottery Fund aims to build on an exciting breakthrough in potential treatments for RP, work that was initially funded by RP Fighting Blindness itself. My team at UCL has shown that certain drugs can counteract the negative effects of mutations in rhodopsin, which is one of the most common causes of RP, using a laboratory model.” “We now aim to continue the preclinical development of these drugs and test if these potential treatments can be taken closer to the clinic. If this approach is successful it could soon be translated as one of the first treatments for rhodopsin RP.” Stakeholder Liaison Group As part of the project there will be a Stakeholder Liaison Group (SLG), composed of members and scientists, which will meet three times a year at the Institute of Ophthalmology in London. Their remit is to review project progress and to discuss the communication strategy. Initially we are looking for 4 members, ideally who have autosomal dominant RP, who would like to be considered and who would commit to attending the meetings 6
and participating in the activities of the group. If you are interested please email Stephen Jones our Development Manager at stephenjones@brps.org.uk More about the Science
effective drugs from our initial in vitro screen. In addition, we will continue the in vitro screen to identify new effective compounds that may be more suitable for clinical application.
Various forms of RP are caused by genetic faults. Inherited mutations in rhodopsin, the light sensing protein of rods cells, are the single most common cause of one form of RP and the majority of these mutations cause protein misfolding (class II mutations).
Furthermore, several of these drugs are already FDA approved or currently in clinical trials for other diseases. Therefore, we believe that some of these drugs could be developed as potential treatments to delay or prevent blindness in rhodopsin retinitis pigmentosa patients.
RP Fighting Blindness previously supported the development of in vitro assay to test drugs to combat the consequences of this rhodopsin misfolding. The new project aims to continue the preclinical development of these potential treatments for rhodopsin RP. In particular, we aim to test the in vivo efficacy of the most
A note from the editors: readers should be aware that whilst there is cause for optimism, it is important to remain realistic about the timescales needed for the development of drugs and other treatments. More about current research threads can be found in the ‘Research’ section of our website www.brps.org.uk.
Channel 4 and our Patient Information DVD by David Head It turns out that a team of producers at Channel 4 Television are more than happy to help us produce our new patient information DVD, as one has a brother with RP, and one has a wife with RP. So after months of delay because we had difficulty finding a project manager, the production has really moved into a different technical league and now promises to be a really exciting project indeed. 7
We will be launching the film early in 2009, probably at an event yet to be organised. The Channel 4 team is not charging us for its time and will apply all their technical know-how to give us a really good product. We have also been able to secure a grant of £2,000 from RNIB, and donations from two companies towards the cost of pressing and distributing the film, on top of the original grant for the project itself. The film will feature three families or individuals with RP from our membership, showing how they cope with daily life through diagnosis and then sight loss. It is aimed mainly at those who have been newly diagnosed but will also include enough medical information and detail that it will be of interest to our wider membership. We will also make it available to opticians and GPs. We had over 50 families offering to be featured, which is really gratifying, so thank you to all those members who put their names forward. As we go to press Channel 4 are auditioning and test filming and we will tell you more as soon as we can.
News … Branch News … Branch News News and Views from the Branches From our volunteers across the UK CROYDON BRANCH Joan Raccagna The Croydon Branch Committee would like to wish you a Happy Christmas and a Prosperous New Year! We have two important dates for your diaries, 2009 meetings will be on Saturday 28th March at 2 p.m. at the CVAB on Wellesley Road in Croydon when our guest speakers will be Professor Kevin Gregory-Evans
and Michelle Carter the RP Fighting Blindness Volunteer Coordinator, and secondly, our AGM will be on Saturday 19th September, though we have yet to confirm our guest speaker. Store collection applications are being made so keep up your keep fit training in preparation! If you wish to raise funds privately for RP Fighting Blindness please let me (Joan) know. 8
We are looking for a branch treasurer so if anyone is good at maths and money this is just what we need. I can be contacted about this or for support and advice on 0208 660 8164. ~~~ ~~~ ~~~ MIDLANDS BRANCH Steve Hollingsworth A big hello from me, Steve Hollingsworth, chair of Midlands Branch. What a great year it has been for RP. We are going from strength to strength with research breakthroughs and raising funds. As you are all aware there is now a team of 8 at head office who are busy working each day. Midlands would like to say a big thank you for their hard work and support to the branches this year. We hold regular quarterly meetings at Harborne Cricket Club. I am aware of the transport and difficulties we face with the large area that Midlands branch covers. So, to try and meet with more members we have decided next year to try and meet in different areas and advertise the meetings more widely through talking newspapers, RNIB and Focus etc. If any members are willing to help us set up a meeting in their area, please get in touch on 01926 633412 or email bev. hollingsworth@btinternet.com.
At our last meeting we had the privilege of Dave Heeley talking about his experience of 7 marathons in 7 days across 7 continents. Dave has become an after dinner speaker, if anyone would like details about his work, the website address is www.blinddaveheeley.co.uk. It is important that we continue to support each other, share information and help each other face problems that arise from RP. So please try and join us. Many thanks to all our branch members for their support this year and I wish you all a Merry Christmas and Happy New Year. ~~~ ~~~ ~~~ DEVON & CORNWALL Julie Allen Mr & Mrs Gale’s annual Summer Cream Tea Afternoon was held in glorious weather, encouraging people from across the counties to come and sample the delicious fare.
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A congenial atmosphere was enhanced by a band playing 60s and 70s music from under a gazebo in the garden. In addition to the various stalls run by Mrs Gale’s grandchildren there was a raffle and an auction, with the band leader kindly acting as auctioneer. Over £1000 was raised for RP research. CEO David Head will be joining us for Christmas Dinner on 13th December at The Devon Motel, Exeter. We look forward to seeing you at 12 noon for 12.30pm. That only leaves me, on behalf of Devon & Cornwall Committee, to wish you all a Happy Christmas and a peaceful New Year.
HAMPSHIRE BRANCH Steve Harris We held a very enjoyable AGM on 13th September in Winchester and were delighted to elect Keith Hatter to our Branch committee. Our speakers included Stephen Jones, who described some of the highlights from the Helsinki Retina International Congress, Tom Mclnulty, a local VI celebrity, who shared some amusing experiences with us, and Professor Shomi Bhattacharya, who gave us a fascinating insight into the LCA clinical trials. Shomi also outlined his work on the RPE25 gene.
YORKSHIRE BRANCH Richard Padmore
At the end of the meeting Shomi’s daughter Rulla and my grandson Oliver drew the winning tickets for our Prize Draw, which raised a very pleasing £750.
Thank you to those who took part in the Stride for Sight walk across the Humber Bridge in September and also to all those who couldn't make it but sent in sponsor money anyway, there were several notable donations.
We will be holding our 2009 AGM much earlier in the year than usual, on Saturday 18th April. Please make a note in your new diaries and watch out for full details in the next issues of our national and local newsletters.
Thanks to the GMB Union who donated £500, the Rotary Club of Derby who donated £250 and Michael Palmer & Co who donated £200. So far we have raised over £2000 for the Research Fund.
Fund raising during the summer and autumn has continued steadily. We completed our street and supermarket collections for 2008 by raising £740 in Hythe and £1303 in Romsey, many thanks to everyone who turned
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out to help, particularly in the rain at Romsey, and we are grateful for the generosity of the folk of these two small towns. In September we received the sad news that one of our most supportive members, June Cotsell, had died. We will greatly
miss June and we extend our condolences to her family. It is now fast approaching the festive season, so we would like to pass on our best wishes for a Happy Christmas and a prosperous New Year to members and all at the office.
_________________________________________________________ TEAM RP from Michelle Carter You know how well Team GB did in Beijing … well now think TEAM RP! We have secured places in three major London running events next year and we need to recruit a massive 120 people to take part. We need members, friends and new supporters to join us to make it a huge fundraising success and great fun too. Places are available on the BUPA London 10k Run, the ASICS British 10k Run and the London Half Marathon. Anyone who signs up to run for us will get lots of support as well as Tshirts and running vests. We are also extending TEAM RP support to people who have secured their own places on the 2009 London Marathon and have chosen to run for RP Fighting Blindness. We have half a dozen runners signed up already for this; if you or a colleague, family member or friend has a place secured, please get in touch. TEAM RP will raise thousands of pounds to further the charity’s work. If you’d like to be involved in any of the London runs please call me on 01280 821334 or check out www.runtofightblindness.org.uk. Pass it on, and Season’s Greetings! Michelle
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Can You Help Sally? Sally Smith, Fundraising Campaigns Manager, describes her work and asks for your help I want to thank all the members and branches who have sent me their fundraising ideas since I started in September. In particular, I am looking forward to building relationships between RP Fighting Blindness and charitable trusts and other grant giving bodies, and to raise the level of income to the Research Fund. In these difficult times, we need to make use of all possible opportunities, so please can I encourage you to contact me if you have any potential links into trusts or corporates (companies) who might be able to support us. Other potential sources of income for us include the livery companies, Lions’ clubs and lots more. It’s my job to make links, tell them about our work and ask them to contribute. Again, if you have personal links I’d love to hear from you. An advantage of starting with a personal link is that the organisation, through you, will already know about RP and probably be willing to listen to us. In addition, very often it can help us get access to the right person, the one that makes the giving decision or recommendation. Many thanks for your help! Sally Smith, Fundraising Campaigns Manager sally@brps.org.uk/01280 821334
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 sally@brps.org.uk 12
A View from the Emerald Isle by Craig Marsh, a member from Dublin We received this letter from Craig, who attended the AGM of our sister organisation, Fighting Blindness Ireland, back in October. We felt it was worth printing here. Dear Christine and David I thought our readership would be interested in an account of the AGM in Ireland. The Fighting Blindness Ireland 25th AGM took place at the Westbury Hotel in Dublin on 4th October. The highlight was undoubtedly the presentation by Prof. Robin Ali on his groundbreaking work on gene therapy and the attendance of Stephen Howarth, participant in the clinical trial. The meeting was opened by the chairman David Waldron who introduced the new CEO Patrick Quinn. They announced the new establishment of Fighting Blindness Vision Research Institute (FBVRI), at Dublin City University. They are confident that this initiative will speed up the search for treatments and cures. Prof. Michael Comer, Head of Research, said that through 2007/08 they were funding ten individual research projects, had established their own FBVRI and had agreed to fund a start-up company to generate new gene therapies and begin clinical trials for blindness. He also said that the work by Prof. Ali and his team proved gene therapy is safe and effective for eye conditions and paves the way for the team at Trinity College (Dublin) to get to clinical trials more quickly. Prof. Javier Romero, Professor of Physiology Universidad Cardenal Herrera, Valencia, Spain, gave an interesting talk on the uses of AntiOxidants in the treatment of Retinal Disease. The question was asked “Which foods should be eaten?” Red berries and yellow peppers were mentioned, but a complete list of foods will appear in the next issue of Fighting Blindness (Ireland). I will pass a copy to Christine and David for possible inclusion in a future issue of this newsletter. Prof. Jane Farrar from Trinity College gave a very enthusiastic presentation about RP and the work of finding a cure, which was a great lesson for anyone with little knowledge of RP. A presentation was made to Prof. Farrar as an appreciation of her work and her recent qualification to ‘Professor.’ 13
Prof. Ali’s presentation was highlighted by the infra-red video film of Stephen Howarth before and after treatment. He had to negotiate passage through an obstacled room under lighting equivalent to street lights at night. It took Stephen 70 seconds to pass through the maze with 18 collisions with partitions and obstacles; at one stage losing coordination altogether and having to be pointed in the right direction. The next piece of film was astonishing. The maze was changed around under the same light intensity and showed Stephen after treatment walking virtually straight through taking 14 seconds and no collisions. Prof. Ali joked: “I couldn’t believe it - I made him do it again.” Stephen made his own contribution to the meeting describing his experiences and answering questions. When asked when he was diagnosed with RP he replied, “At age eight after being given spectacles previously. I thank my mother who read up on my symptoms as RP and showed my GP. This lead to referral and diagnosis of RP”. It was a special meeting to attend and the team of volunteers were superb. I was met outside the hotel as I approached with my white stick by three volunteers who led me safely to my position at the table after registration. It was a great relief after shuffling my way through O’Connell and Grafton Streets on a very busy and blinding sunny Saturday lunchtime! Craig Marsh
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Where There’s A Will There’s A Way by David Head, Chief Executive In 2008 RP Fighting Blindness has been able to invest increasing amounts into research projects, improve the quality of information services and take on several new members of staff as a foundation for further growth over the next few years. It really is an exciting time for us, both as an organisation and for the research. The trustees have long wanted to make changes, but what was the driver behind it happening now? What gave them the confidence to be able to invest the time and money to change the organisation and aim for so much more? The answer is simple – early in 2007 the charity was one of a handful benefiting from a substantial estate. The donation of over £600,000 strengthened our reserves, giving a firm financial footing for the changes we are going through now. The lesson is there for us all, a legacy can and does make a HUGE difference to a charity the size of RP Fighting Blindness, much more so than some of the really large charities. This donation doubled our income for the year and is having a long term effect on our work. Really substantial donations such as this one are the exception though, they are few and far between and it would be foolish for us to rely on it happening again. However we can, and will, encourage people to leave us a gift in their Will. If we do this, then in the future we will all benefit. For some charities, legacy income has become ‘bread and butter’. This is the result of years of asking to be remembered in members’ and supporters’ Wills. It is a difficult subject to broach, because nobody likes to think about their own death or the death of a loved one, but as Benjamin Franklin said, “In this world nothing is certain but death and taxes.” 15
Writing RP Fighting Blindness into your Will is not difficult to do. If you already have a Will you can add a codicil (amendment) to it at little cost. If you haven’t made a Will, it’s not expensive to write one and to be honest, it ought to be done anyway – there can be tax advantages and, of course, it leaves your affairs in order for your family at a time of heartache. Gifts can be left to RP Fighting Blindness (and indeed to any charity) as a straightforward amount or as a percentage of your estate. Individual items can also be gifted. Legacies to charity are exempt from Inheritance Tax and in some cases there can be very substantial savings to be made. If this article has made you think about your Will, we can provide the wording of a codicil to send to your Solicitor. Our legacy officer Martin Gleeson can answer any questions you might have. Please get in touch at any time by emailing legacies@brps.org.uk or calling the office. Finally, if you do leave us a legacy, please let us know. This type of information is treated in the strictest confidence. You can make a real difference.
Two Dates for your Diary The Retinal Awareness Group (RAG) is holding its 21st Blackpool Weekend from 24th to 26th April 2009 at the Carousel Hotel. Keynote speakers will be Professor Tony Moore (Moorfields) and Dr John Gill, (RNIB). For more information phone Carole Holmes on 01253 404194 The 2009 RP Fighting Blindness AGM and Members’ Conference will be held in Cardiff on Saturday 20th June. Details will be in the Spring Newsletter but the event will include a high quality session on research advances and a top keynote speaker. The event is to be hosted at the Millennium Stadium, just a short walk from the central railway station. 16
News …More Branch News … More B News and Views from the Branches From our volunteers across the UK DORSET BRANCH Hazel Hart
As I write this we are days away from our Autumn Coffee morning, this year coffee and cake at a local teashop, where we will all have had the chance to catch up. The new committee is slowly finding its feet - it was never going to be easy to follow the work of the retiring committee! For a number of reasons our fundraising this year has been more modest, but Janet and Graham Keen in West Dorset have been relentless and have done a fantastic job. Friends of theirs also kindly asked friends and family attending their golden wedding party to donate money to us instead of buying them gifts which raised an amazing £900; an idea for others perhaps?
Onwards and upwards for 2009, our AGM will be on Saturday March 28th. I am delighted that Professor Lotery has agreed to come and speak. Sally Smith from Head Office has also accepted our invitation to speak and she will, I am sure, inspire us all with fund raising ideas for the coming year. My very best wishes to all of you and your families for the festive season. See you next year! ~~~ ~~~ ~~~ ESSEX & SUFFOLK BRANCH Steve Carrington Another year has almost gone and what a year we have had. Big thanks to Margaret for her Stride for Sight in August, which raised a total of £3041, of which £482 was raised by Gloria Adam’s son Clive from sponsorship on his walk. Thank you and very well done to Adam and everyone else who took part, and likewise to all those who have raised money for the Branch over the year. Thanks to David Head, our CEO for coming to our AGM in September and giving a very 17
encouraging speech on the way forward for the charity. As the song says, “Things can only get better”! I am currently standing in as temporary Chairman for the Branch as Paul Newson decided to step down this year. If there is anyone out there who would like to take over this position, please let me know. See you all again in 2009, have a great Christmas & New Year. ~~~ ~~~ ~~~ COVENTRY BRANCH Leigh Kelly
2008 began on a sad note for our branch with the passing away of Gwen Baxter, Jean’s mum and Richard’s mum in law. Gwen was
an avid supporter through all of her life, rattling tins for many years along with her husband Charlie. Neither of them will be forgotten. It was good to meet David Head our Chief Exec who kindly visited our branch in April, bringing us up to date with what is happening. Hope we didn’t frighten you too much David, and remember our door is always open if you would like to make a return visit. Our summer outing this year was a barge trip along the Ashby canal in Leicestershire, followed by a lovely meal in a local hostelry. What a superb day it was. Luckily we managed to pick one of the few sunny days of the summer! We were made very welcome both on the barge and in the pub. Thank you to Jean and Richard for organising this. Our next social is our annual Christmas meal on Saturday 13th December; we are returning to The Royal Court Hotel in Coventry, as we had such a wonderful time last year; they really made us feel special. We have also booked this venue to celebrate our 30th Anniversary on 27th June 2009. If anyone would like to join us at either of these events please contact me. Fund raising has been a little slow this year, not through lack of 18
trying but I think it’s a sign of the times. Thank you to our team of dedicated tin rattlers. I went tin rattling at the Hot Rod Racing at Mallory Park with our previous Chairperson, Julie Norman. Thank you Julie, don’t forget us. It is an exciting time at RP with the breakthroughs in research in 2008. Here’s to ongoing success in 2009! ~~~ ~~~ ~~~ EAST OF SCOTLAND Jim McLean All’s well up here and we had an excellent well attended June meeting where our guest speaker was an old friend of the branch Prof Alan Wright from the Eye Pavilion in Edinburgh. Always very good to hear from someone directly involved in the research. Well done that man. On a personal note, I got 3 weeks ago my first folding white stick. I was a wee bit self-conscious first time out using it but in the great scheme of things and, compared to acquaintances, no great shakes, So, if you’re worried/ concerned/anxious about taking that step don’t be - if I can do it so can you, it helps enormously.
A word of warning though, don’t go on holiday to Mevagissey in Cornwall, have a bottle of wine with dinner and then going back to your digs think you’re Zorro. Once again taking the chance to speak to all our widely scattered members up here via this forum, I have from HQ CD’s of the research session from this years AGM, if anyone wants a copy we’ve decided that the branch can stand the cost and will provide copies to any of our troops who wants one, just get in touch, call me on 01324 553463, or emailing jimuckmclean@ blueyonder.co.uk will do the trick. Toodle pip, Jim
News Snippet … Hot Rod Results Our collections at the Classic Hot Rod race meetings, where we were charity of the year for 2008, netted just under £5,000 in donations. A cheque was collected by CEO David Head in September at Birmingham Raceway, where he took a lap of honour on the back of one of the cars! In 2009 the Classic Hot Rods are supporting Lincs Air Ambulance. 19
Retinitis Pigmentosa and Driving by Christine Medway When someone is diagnosed with RP and holds a driving licence, the law states that he or she must notify DVLA. Failure to do so will result in a penalty. It must also be pointed out that the driver’s motor insurance, in the event of an accident, (whether the fault of a third party or the insured), may be rendered invalid. Saying that, there are some people who may retain sufficient vision to be able to pass the stringent eyesight tests required by the DVLA and be deemed suitable to carry on driving until there is further sight loss. Thereafter that person will have to take the tests at regular intervals. The priority, as far as the law is concerned, is to ensure the safety of the general public. It is understandable that being considered unfit to drive, for whatever reason, is a very difficult moment in anyone’s life. Ceasing to drive brings up many issues for each individual and finding solutions will vary according to individual circumstances. Having access to a private vehicle for work and pleasure is considered the norm in the UK. However, there are many people who do not have that privilege for health, age, economic or cultural reasons. In towns and cities there is the option of public transport. Rural communities may have other schemes in place. If on the register as sight impaired, then the local authority may offer a bus pass or other travel concession and rail costs can be reduced by purchasing a Disabled Persons Railcard. Those on the register should apply for the lower rate of the mobility component of Disability Living Allowance, which is intended for costs such as taxi fares. In certain circumstances the ‘Access to Work’ scheme may help with transport to work. There is assistance out there, but you need to be proactive investigating the possibilities and find the best solutions to suit the situation. If you need more information about the driving licence regulations visit www.dvla.gov.uk or www.direct.gov.uk/motoring. The RP Helpline can also provide guidance, call them on 0845 123 2354. 20
News Shorts! Ulp! 67 year old Ray Drew is jumping mad. On 21st December he intends to leap off the famous Middlesborough Transporter Bridge attached only to a bungee, to raise funds for our research work. He say “Please give support as I, Madman Ray, perform this death defying leap into the unknown as I plunge 170 feet towards the river Tees.” www.justgiving.com/madmanray Art Collectors Alert The artwork on page 2 is to be auctioned in 2009, if you would like to register an interest in attending the auction please email or telephone the office. Correction We reported earlier that runner Annie Bateman was running the Great North Run in October. Indeed she did, raising over £300 in the process. However we incorrectly reported that Annie has RP, in fact it is her brother that has the condition. Our apologies to Annie and Steven. www.justgiving.com/anniebateman
Recycling The new recycling scheme for printer cartridges and mobile phones is off to a great start, with hundreds of envelopes having been requested already. The scheme has the potential to raise many thousands of pounds. Let us recycle your old phones and cartridges, call or text 07779 035170 for a pre addressed FREEPOST envelope and pop into the post. It really is that easy! Robin Hood, Robin Hood, Running through the glen Alan Smith of Nottinghamshire, who has RP, ran the Robin Hood Marathon this autumn and raised a fantastic £783. Modestly, Alan hadn’t said anything, but his proud Mum Wendy felt this result deserved a mention. Quite right too, thank you Alan. Trek Success Readers will know already that we have over 20 people lined up to trek the Sahara Desert in March. Congratulations go to trekker Jim Adamson who has already exceeded his fundraising target of £2,750 in sponsorship, 5 months ahead of schedule. What a great result!
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The Radio 4 Appeal RP Fighting Blindness secures third appeal broadcast RP Fighting Blindness has been chosen by the BBC for another Radio 4 Appeal, this will be the third time we have been selected and a great opportunity to raise funds from the general listening public, as well as make them aware of retinitis pigmentosa and the heartache it can cause in families. Following in the footsteps of Rabbi Lionel Blue and entertainer Rolf Harris, this time our appeal will be made by the Radio and TV presenter Jeremy Vine. We are absolutely delighted that Jeremy has agreed to support us. His voice is very well known to BBC listeners and he will add credibility to our case. Jeremy has told us he is “proud to be doing the appeal” which will be broadcast on 11th January. The script asks the listener to think about how they would cope with being told they were going to lose their sight and that there was nothing that could be done to stop it happening. It goes on to mention the ‘chain’ of inherited blindness in families and the emotional turmoil faced by parents of a diagnosed child. Last time we were featured the appeal raised about £12,000, so this promises a great start to 2009 fundraising. We will keep you posted, in the meantime please ask as many people as you can to listen.
BBC Radio 4 is on 198LW, FM (various frequencies), Digital Radio and Digital TV. The RP Fighting Blindness Appeal will be broadcast on Sunday 11th January 2009 at 07:55 and 21:26 and Thursday 15th January at 15:27. The appeal website is at www.tinyurl.com/RPappeal 22
Of Dogs and Divas By Diana Hellbuschz It was in June that something in the RP e-newsletter caught my attention; a Singing Weekend for blind and partially-sighted people was to be held in the Cliffden Hotel in Teignmouth. For me this was like a Call from the Wild. I have been an active choir member for many years, I have rather advanced RP, and Teignmouth was where I went to boarding school many aeons ago. So, I contacted the lady in charge – and what a lovely lady! – I asked my youngest son, also a singer, if he´d like to come along – and then I phoned the hotel and booked us both in. It was a decision made in haste, regardless of other commitments, but I knew it was the right thing to do. Now I am safely home again (in Germany) and I would like to tell you about this wonderful weekend. It was very special, not just for the music, but for the human contact and friendship, and a totally different way of spending a weekend. The first day there was the usual scuffling among the sopranos – who can sing the loudest, or who is ready for the leading lady at the opera? Well, the potential divas amongst us jostled for the honours. But by the second day we had all settled down and actually produced some quite nice sounds. I had the impression that the alti were behaving themselves better – but you would have to ask them, as I´m not actually sure. And what was going on in the back row? Well, the men were all supposed to be singing the same line of music, as there were no tenors. There seemed to be a difference of opinion about the notes and also a few teddy-bear growls. But they all took it in good spirit; if these had been the soprani, there might have been a real problem . . . With two sessions each day, we learned some Renaissance music from England and France, a beautiful Jewish prayer, a boisterous cowboy song from Argentina, as well as a couple of canons taught by members of the ensemble. It was a delightful experience. An added dimension was the presence of so many guide dogs, who on the first day were battling for the best place, just as much as their mistresses. It was sometimes difficult for us humans to find a place to put our feet. This aspect of singing was certainly a new experience for 23
me! But by the second day, the dogs too had settled down and patiently waited until their owners had finished the session.
“oh pur-leeze”
By Sunday evening, we were confident enough to give a little concert for the other hotel guests. There was nothing but praise from our audience and for us in the choir it was great fun. On Monday we met for the last time for a review and to sing our songs together one more time. Then it was time to say farewell and set off on our various homeward journeys. Many thanks to Christine Richmond for all her hard work and patience, – and to Larry for rescuing me from the summer house where I had been accidentally locked in on the first day! Watch out for the advertising for next year`s gathering, which will take place at the end of July 2009. For the singers amongst you, it´s well worth the effort. And yes, I DID go and take a peep at my old school, which I hadn´t seen for 50 years, but that´s another story . . . (Thank you Diana for the great write up ... Ed)
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Recruitment News RP Fighting Blindness has recruited a new Finance Assistant. Carol Vaughan joined in November to look after our book-keeping and other financial matters, reporting to our Treasurer Henry Bennett and Chief Executive David Head. Carol lives just a couple of miles from the office in Buckingham. David said, “As the charity grows and our finances become more complex it’s essential we maintain good records and Carol’s experience of running small business finance will be a great asset.”
Easyfundraising and Everyclick at Christmas Did you know that at www.easyfundraising.org you can shop online for Christmas and nominate RP Fighting Blindness to receive commission of up to 15%? Did you know that at www.everyclick.com/christmas you can arrange online Christmas ‘cards’ for your friends and colleagues? It's simple; you choose a card, add a personal message, include an image, make a donation and then book a day to have Santa deliver it to all your friends nearer Christmas. You can nominate RP Fighting Blindness to receive 121% of the amount you donate.
Trekking for George Thompson Two members of the Sahara expedition, Karen Young and Helen Leivers, are making the trip in memory of long standing member and treasurer George Thompson, who died earlier this year. If you would like to support them, you can make a donation at www.justgiving.com/helenandkaren. Karen said “We are going to walk this challenge as a tribute to the late George Thompson who was an original founder member and our former boss and friend.” 25
Crossword Clues See page 27 opposite Across
Down
1. 4. 8. 9. 10. 11. 12. 14. 15. 18. 21. 23. 25. 26. 27. 28.
1 &17 Trek destination (6,6) 2. Doorway or chance (7) 3. Most delicious (8) 4. Lamp, door, or pillar & (4) 5. Should (5) 6. Makes unlikely (6) 7. Makes a small dent (5) 13. Demolishes (8) 16. Check over, test (7) 17. See 1 down 19. Small rodent (5) 20. Drives (6) 22. Purple flower (5) 24. Past Russian leader (4)
Star Trek engineer (6) Pleased with oneself (5) Takes notice (5) RNIB radio station (7) Lifting up (7) Jail, porridge (4) Morose (3) Scrambled or fried? (4) Level (4) Male cat (3) Slippery fish (4) Rejected by society (7) Uncovers (7) Rust is iron ___ (5) Needed for your printer (5) Small land masses (6)
Articles for the Newsletter Members and Branches are invited to send news items for inclusion each quarter. Diana’s item on page 23 is a good example. To help us with the editing, we would ask the following: • Branch messages should be limited to 200 words and sent to us electronically if at all possible. Photos are welcome in electronic format but space can be limited sometimes. • If you write a member’s item, unless you stipulate otherwise we might use it on the website as well. • We can’t guarantee insertion (we’ll do our best) and we reserve the right to edit your text to fit. • The deadline for the spring issue is 10th February 2009 26
RP Fighting Blindness Crossword No 3 1
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WIN ÂŁ50 in High Street vouchers, donated by BCQ Print in Buckingham, to spend in the New Year sales. Your clues are on Page 26 opposite. Send the completed grid to Members Crossword No. 3, RP Fighting Blindness, P.O. Box 350, Buckingham, MK18 1GZ. Name: .............................................. Tel: .................................... Postcode: ....................... (The closing date is Monday 5th January) Ouriprinter, BCQ of Buckingham, has kindly provided the prize for the crossword competition. To sponsor the next competition or an edition of this Newsletter email david@brps.org.uk 27
FULL COLOUR
A unique opportunity to join five other RP Fighting Blindness adventurers on the trek of a lifetime. An absolutely unique experience, one you will never forget and never repeat.
EXCLUSIVE TREK TO EVEREST BASE CAMP
October 2009
Call 01280 821334 now to register your interest in this exclusive event, and to receive more details as they become available. Strictly limited to 6 places. Registration fee and minimum sponsorship required. Sorry but this trek is not suitable for people with a visual impairment.
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