Look Forward issue 130 - Spring 2009 by Retina UK

Quarterly Newsletter from the British Retinitis Pigmentosa Society Your

Spring 2009 Issue (No. 130)

In This Issue ... The Radio 4 Appeal Result News From Around the Branches Member Receives Retinal Implant The Great Light Bulb Debate The Mother of all Sponsored Walks Symphony Orchestra Helps Fight RP RP Membersâ€™ Conference June 2009 An MBE for Carole Holmes ... ... and lots, lots more.

Membership of RP Fighting Blindness Some members’ subscriptions for 2009 are now overdue. If you have not yet paid please send your cheque as soon as possible as this helps with our cash flow and saves us time printing and posting reminders later. You can tear off this page to use the form below. Please consider adding a donation to your subscription; contributions of any amount to support our work are always very welcome. We are dedicated to funding research into treatment for retinitis pigmentosa (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. Membership also entitles you to receive this quarterly newsletter, which can also be downloaded from the members’ area of our website at www.brps.org.uk (Your password is ‘retina’). PO Box 350, Buckingham, MK18 1GZ E-Mail: info@brps.org.uk

Tel: 01280 821334 Charity No. 271729

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(either) Please renew my membership for 2009 for £15

(or) My subscription is paid by Standing Order from my bank

Please send a copy of ‘My Vision of Hope’ (see Page 8) for £5

Please send me ______ raffle tickets at £1 each (see Page 3)

I enclose an additional donation of £

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Please send this form and your cheque payable to ‘RP Fighting Blindness’ to the office address above, thank you. 2

Contents Letter from the Chief Executive

Leanne Inspires a 2,650 Mile Walk News from the Branches

Low Energy Light Bulbs ..

Answers to Puzzles

Member Receives Retinal Implant ..

Telesensory Europe

My Vision of Hope

.. ..

More News from the Branches The Radio 4 Appeal

More About Retinitis Pigmentosa and the Roads

Stride for Sight

News Snippets

Membersâ€™ Conference (AGM) ..

Save The Dates

Louisa Lytton in Milton Keynes

Run for Us

Sailing

Volunteers Needed

Don Grocott / Carole Holmes Vitalise Holidays

Talking of Adventure / Gift Aid Prize Crossword ..

.. ..

This yearâ€™s annual prize draw tickets will be available soon. Prizes include a holiday in Bulgaria, High Street vouchers, and plenty of others. You can order tickets using the form on the inside cover. Please help us reach our target of 20,000 tickets. 3

Letter from the Chief Executive Dear Members, I can’t believe how quickly this edition of the newsletter has come round; the seasons just seem to be flying by. They say that time flies when you are enjoying yourself and there’s no doubt we have been having fun here making plans for 2009 fundraising, so perhaps that’s what it is. I’m also looking forward to taking part in the first overseas RP fundraising trek to the Sahara Desert. It feels like a perk of the job at the moment but I might think differently after a few days trudging through hot sand over dunes in temperatures reaching 40 degrees. There will be a report and photos in the next newsletter; in the meantime please wish us well and consider sponsoring our adventurers. A list of names is on page 25 and you can sponsor the whole group at www.justgiving.com/davidhead. We’re in the process of finalising the charity’s accounts for 2008 and it looks as though we had another good year, with income (excluding legacies) up on 2007 and a record commitment now to research grants. We’ve had a good start to 2009 as well, with the Radio 4 appeal and other initiatives helping us to cope with the general recession we are all facing; let’s hope for continued success. There’s no point in raising money if we don’t spend it on research, and we’ve had a number of promising grant applications submitted at the time of going to print, though they have not yet been fully assessed by our Medical Advisory Board. We have a deadline at the beginning of March and September each year for applications and we want to attract the best scientists into RP work. Our winter newsletter, in which we experimented with colour, seems to have been well received so we are continuing the format. I’d welcome comments and views on both the printed and audio versions, please contact the office at any time with your feedback. As ever, my thanks to you all for your ongoing support. David Head MBA Chief Executive 4

Leanne Inspires a 2,650 Mile Walk from the fundraising team 29 year old accountant Leanne Collins has inspired author and adventurer Jordan Summers to take a massive 2,650 mile trek across the USA. Five years ago she was told that she has RP and that she would gradually go blind and spend much of her life in darkness. In that time Leanne’s eyes have deteriorated but she hasn’t let that stop her. After a year of trying to come to terms with her diagnosis and fighting depression, Leanne decided to spread her wings and see more of the world. She has lived and worked in Gibraltar, progressing to Finance Manager at online gaming company Mansion. She enjoys the ex-pat lifestyle and was soon “head-hunted” to a fabulous new job as a Financial Controller in Panama City. She is a beautiful, intelligent and fun loving woman who is learning to live with her partial sight and is determined to make the most of life. Up to now she has always tried to keep quiet about her RP – her work colleagues just thought that she was clumsy when she kicked the waste bin for the third time that day! But she has now turned a corner and decided that RP is part of who she is. She needs those around her to know about it and that sometimes she needs friends to look out for her. Leanne is very grateful to her friend Jordan Summers for taking on such a massive challenge to raise more money for research. “I am so grateful to Jordan for his commitment, not only to invite donations, but to raise awareness of this disease. There are over 2 million people with RP and it could affect any of us at any time. Thank you Jordan and good luck on your amazing endeavour– we will be following your every step.” And no, you didn’t mis-read our headline; Jordan Summers will be tackling the famous Pacific Crest Trail, (PCT) a 2,650-mile hike from Mexico to Canada through California, Oregon and Washington. He will be starting on 5th April and will be asking people in both the USA and the UK to join in his quest for a cure for RP by making donations. Jordan writes travel books and lives in the wonderful sounding Elk 5

Grove, California. When asked why he had chosen to support our cause he said “Sharing the things that I see on my adventures has always been an important aspect of the whole experience. My current hiking adventure is dedicated to giving hope that some of the 2 million people who are visually impaired or blinded by RP may be able to see the things that I can see one day.” Jordan is 57 and an author of three books on hiking and walks. He lives with his partner near Sacramento, California. Originally from the eastern mountain states of North Carolina, Tennessee, and Virginia, Jordan has lived off and on in California since the 60s. Attracted to the mountain states, Jordan hit Colorado for college and led llama treks from his ranch in Oregon. Jordan’s adventures have spanned every state in the American West and he has been planning this particular expedition for many months. The PCT runs across the entire USA from Mexico to Canada. It traverses high-desert, volcanic peaks and glaciers, runs through three states, climbs 60 major mountain passes, descends into 19 major canyons and takes in over 1,000 lakes. It traverses 7 US national parks, 24 national forests and 33 wildernesses. It is truly a challenge; in fact fewer people have hiked the full PCT than have climbed Mt. Everest. Could it be that Jordan’s so called thru-hike is tougher than climbing the tallest mountain on Earth? David Head, Chief Executive at RP Fighting Blindness, said “These are very exciting times for RP research, but we have to keep up the momentum if we are to find a cure or treatment in a reasonable time frame. As with many charities this boils down to money, and we rely entirely on voluntary donations and grants. Jordan’s expedition and support is fantastic, I hope people will recognise the challenge he is taking on by making a donation “ You can learn more about the expedition, or make a donation in recognition of Jordan’s commitment, at www.longwalk.org.uk. 6

News … Branch News … Branch News News from the Branches from our volunteers across the UK YORKSHIRE (HULL) BRANCH David Stevens We have just done our first collection of 2009 at Tesco Store in Beverley East Yorkshire on Jan 23/24 and raised £380 for the research fund. My thanks to my wife Elizabeth, Graham and Margaret Adamson of Leeds and my friend John Hoe in Hull, who came and helped. Also thanks to John’s wife for driving us around. Our Humber Bridge Walk 'Stride for Sight' in September raised a fantastic total of £3,443. I want to thank all those who took part in the walk and all those who raised money for our event. Well done to everyone, what a great effort. (Wow ... Ed) Yorkshire Branch AGM is on April 25th at Leeds Soc for Deaf and Blind People. If you would like details or if you can help with collections in the future please telephone me on 01482 856040. ~~~ ~~~ ~~~ SOUTH WALES BRANCH Marian Evans It is with deep sadness that I have to report the death of

Catherine Evans, one of our branch members, who died suddenly in September at her parents’ home in Porthcawl. Cath was 47 and had been suffering ill health for some time, but her death came as a shock to us all. She was never one to let her disability get in the way of her getting on with her life. She was always cheerful and often courageous. Beryl and Martin Hughes were founder members of our branch and for many years Cath was an enthusiastic and active member of ‘the team’, and so will be greatly missed at our meetings. Our thoughts and sympathy go out to Beryl, Martin, their family and friends. On a happier note, we have a branch lunch meeting set for 22nd March at the Ivy Bush in Carmarthen at 12:30. Please call Heulwen on 01994 484206 to book a place. A coffee morning is arranged for Sat 25th April at The Day Centre, Carmarthen; all are welcome. 7

HAMPSHIRE BRANCH Steve Harris We were delighted to send £16,500 to the Research Fund during 2008. This is a fantastic result, and huge thanks are due to everyone who worked so hard to help raise it. Our AGM on is on Saturday 18th April at St Lawrence Parish Rooms in Winchester. We will be delighted to welcome Selwyn Higgins back to our Branch, this time as our principal speaker. Selwyn has a long standing association with us, and has many stories to tell about his time with the Society, as well as being well qualified to bring us the latest research news. We are also looking forward to meeting Michelle Carter, who is coming down from Head Office to describe her role with the charity.

Phone me on 023 8047 6894 or contact by email on hampshire branch@brps.org.uk. We are sad to say that a long standing and popular figure from our branch has died recently. We will miss Reg Forder very much from our meetings. He and his wife Sylvia were seen out on street collections on so many occasions, as well as helping at the branch AGM. Our sympathies go to Sylvia and her family. Read the Story Behind RP Fighting Blindness Buy the book…. ‘My Vision of Hope’ by Lynda Cantor MBE is now available at a bargain members’ price of £5 incl. P&P.

Our street collections start soon. We have events on 25th April in Bitterne, 16th May in Chandlers Ford and 4th July in Romsey. If you would like to pass an hour or so on a warm Spring day, shaking a can and chatting to passers-by, please get in touch.

Please suggest your local library order a copy too (£9.95), explaining that the book tells the story of a young mother of two’s determination to fund research into the genetic condition that caused her to lose her sight. This is a true story of courage and of interest to the general public.

On Saturday 13th June Adrienne and I open our garden at 36 Swincombe Rise, West End. Do come and enjoy the garden, refreshments, and plant sale.

All printing costs have already been met; proceeds go entirely to the Research Fund. To order please use the form on page 2. 8

Low Energy Light Bulbs by Selwyn Higgins Following recent press coverage about the potential withdrawal of the traditional light bulb, several members with RP have asked whether there are any hazards resulting from the use of Low Energy Light Bulbs. These bulbs work very much like the long tubular fluorescent lights. The old type of tungsten filament lamp is very inefficient, as only a tiny percentage of the electrical energy that goes in is converted into light. The vast majority is converted to heat, which is why that type of bulb feels so hot. The new bulbs give about four times as much light for the amount of electricity that goes in. One possible reported hazard with the new bulbs is if you break one, because they contain a tiny amount of mercury. However the amount is so small that you would need to break many bulbs at the same time in a closed room to cause even a slight hazard. There is a potential problem with flicker, as with all fluorescent types, but this is now almost eliminated in the newer versions. This is a problem mainly for people with epileptic tendencies and diseases such as ME. These bulbs do emit a small amount of ultraviolet light, which could be a problem for people with skin or retina problems but again the amounts are very small. This needs to be considered in relation to the amount you get from daylight. You would need to sit with your face almost touching the bulb (within 2cm) to get the same dose as midday summer daylight. At 30cm (about 1ft) away there should be no problem at all. All things considered, it seems that the new low energy bulbs shouldnâ€™t present a problem to our members. However if you do find them less bright than the old type, you can use a higher wattage bulb and still use much less electricity than the old type. The old type will be available until 2011 so there is plenty of time to build up a stock. Added to that, friends and relatives will be replacing bulbs so why not ask them to save the old filament lamps for you? 9

Answers to our Puzzles from the Head Office Team As several readers have pointed out, we omitted answers to the four puzzles we published last year. Sincere apologies for this and the answers are produced below. General Knowledge Quiz (Autumn 2008) 1. George III 2. Weston Super Mare 3. Printer or Greek Sailor 4. Great Auk 5. Dandy Nicholls 6. Old Bailey 7. Margot Fonteyn 8. Joel Garner 9. Norman Hartnell 10. Cerebus 11. Abbott & Costello 12. Collared Dove 13. Gold Miners 14. Atlantic 15. Sloe 16. Jason Robinson 17. Lake District 18. Venomous South African Tree Snake 19. John 20. Thomas Aâ€™Beckett 21. Hydrogen 22. T S Elliott 23. James 1 24. 30th November 25. Dried Fish 26. Traffic Lights 27. Two 28. Question Void 29. Barley 30. Canaan 31. Orange 32. Crane 33. Four 34. Grenadine 35. Curling 36. Dragonfly 37. Sheffield 38. Hungary 39. Birds Eggs 40. John Williams 41. Six 42. Derbyshire 43. 1969 44. Laughing Gas 45. Ruth Rendell 46. Orange 47. Spinach 48. Acrophobia

Crossword Puzzle No. 1 (Spring 2008) R E T I N A O O O T T U R I N R U Q S O N E U V E A U D A N T E Y E S P E X E O P E N Q P N U U A M N E S I A R U E L T R I E D

L O T U S O U O O U N D E L D O E P R O M E D N E X I T R T A U A K E R S N M S G U I D E E S N O D D E S T

Crossword Puzzle No. 2 (Summer 2008) E L E V E N L P L S B R I N E H O T P O W E A T H E R S P A T S H I N P T R I U N D O B R O F S P A N T O N E L O A N E R R O L

C O S T A U A R O L S T E R L I O S N O W U N S O I N K W I P L A B B E R D B A A L L E Y Y E E U S E R E R

Crossword Puzzle No. 3 (Winter 2008) S C O T T Y A P A D H E E D S I A N T N R A I S I N G A N E S E G G S D T O M E E L S O S U T U E X P O S E S R I A E T O N E R

P R O U D O U E N S I G H T T H E S T I R A D S E V E N S X S U T C A S T R M E O X I D E Y N R I S L E T S

Member Receives Retinal Implant by David Head At an event run by US company Second Sight at UCL in January, we were able to learn more about clinical trials of their ‘Argus II’ retinal implant, on which we have reported previously. The device uses a camera linked to a computer which in turn sends signals to an electronic chip implanted into the retina to stimulate a response.

I have to point out that we have not funded these trials at all, and nor do we endorse the company or technology. However we felt it was really important that we took the opportunity to invite our members to learn more. Also, the volunteers who have had the devices implanted in the last few months in London stepped forward at a similar event we organised last year, so we wanted to learn of their progress. What’s exciting is that it’s actually happened. Not to rats and mice, but to three of our members. One of the subjects, John, was at the event, to tell the audience about

his experiences and answer questions, which he did freely. Learning to See? There’s no doubt it’s made a difference. John has no vision at all through RP and in fact this was one of the criteria for joining the trial. Now he is “learning a different way of seeing”, as he put it, as he works to interpret the various signals the implant is generating. John and the staff from Second Sight were anxious to point out that he is not seeing pictures in the way we might imagine, but receiving a series of signals that he is learning to interpret. He is also helping the device programmers to update the software continually. John can now find simple objects on a table, locate doors and windows, and recognise when there are people and objects in front of him. Crude it may be, but the fact that someone’s quality of life has been improved is exciting. As well as hearing presentations from Dr Lyndon Da Cruz from Moorfields Eye Hospital, Dr Andrew Webster (Moorfields), Robert Greenberg (Second Sight) and John, the audience was able to ask questions of the panel, some of which are listed below. 12

John also demonstrated the device and chatted over coffee after the presentations.

16 electrodes. The Argus II is a 6×10 array of 60 electrodes. We are working on more complex devices but it’s impossible to say when these might emerge or be tested, they are in development. What types of sight loss are suitable for treatment?

Here are the Q&A from the event: How long before you can say that a retinal implant will really enable someone to see? A. Dr Da Cruz: Impossible to say, it depends much on how you define sight. For someone with no sight, the implant is already helping. A. John: It has to be thought of as an alternative way of seeing. I am not seeing pictures in the way I used to be able to, but I am learning to interpret the signals I am getting from the device. How many electrodes (pixels) does the device use and what is the prospect for higher resolution in the future? A. Rob Greenberg: The original Argus I device was a 4×4 array of

A. Dr Webster: At present we are operating on patients with RP though it may be that as the technology is proven other conditions could be treated, but this is some way off. How do I volunteer? A. Only patients with advanced RP, thus having no or virtually no sight, are eligible. You must be over 18, in good health and be able to travel to Moorfields regularly. Email Dr Da Cruz at lyndon.daCruz@moorfields.nhs.uk. Please do not contact RP Fighting Blindness as we have no influence over patient selection. How often are you using the device? A. John: At the moment it takes some concentration, so I am using it around the house and nearby for 2-3 hours at a time, perhaps 3 or 4 days per week. A. Dr Da Cruz: We have imposed 13

no limits on the use of the device; away from the testing it is entirely up to the patient and depends on their concentration and progress interpreting the signals. Will it work for someone with any residual retinal function? A. Dr Webster: Possibly, future trials will tell. At present we are wary of confusion if the brain is receiving two sets of signals. 8. John, did you have any sensation at all beforehand? A. John: No. I did get the occasional ‘floater’ but no sight. 10. What is the theoretical limit of resolution? A. This is governed by the materials being used; currently the electrodes are made of platinum. Increasing the number of electrodes or reducing the space between them can lead to problems with the power needed.

Telesensory Europe Visual Aids Telesensory Europe supplies useful equipment such as scanners and cctvs. One of their UK dealers has now offered to contribute part of the proceeds of any sales to our Research Fund. Telesensory Europe receives trade-in cctvs and scanners when clients purchase new low vision or blindness aids. Dealer Dr Laird will donate 20% of the price of any used /demo equipment. For example, a used or demo scanner that cost £1700 new would sell for £900 and we would receive a donation of £180. Current offers include Optelec 17" cctvs, Telesensory 17" colour cctvs and Telesensory scanners. Almost new equipment can be bought for as little as half price. Contact LPor9146@aol.com for more information

11. How is it powered? A. The implant is powered by induction; there are no wires to the eye at all. The power is transmitted from the glasses as is the signal from the control box. READERS ARE REMINDED THAT RP FIGHTING BLINDNESS IS NOT FUNDING OR ENDORSING THE WORK OF SECOND SIGHT INC. 14

News …More Branch News … More B News from the Branches from our volunteers across the UK HERTS & BEDS BRANCH Jon Addison

ESSEX & SUFFOLK BRANCH Steve Carrington

We held our Christmas get together on December 6th, and were kindly joined by CEO David Head, who updated and informed those members present on how RP Fighting Blindness is evolving and where it aims to go.

Hello again all, especially to our new branch members that I spoke to over Christmas and the New Year. You have joined us at a very exciting stage on both the research and development side.

We raised over £10,000 in 2008 with some money still owed that will now go into the 2009 pot, a great result. 2009 is off to a flying start with nearly £700 collected at a Morrison’s Store. Recession! What Recession!? Planned events and collections for 2009 are as follows:Mar 20 Apr 11 Jun13 Jul 18 Oct 20 Dec 5

Disco W.G.C. Marshalswick collection AGM Potters Bar St Albans collection Harpenden collection Christmas get together Potters Bar (T.B.C.)

If anyone can support us running any of these events, please contact Jon or Nicky on 01707 330140 or jonaddison66@aol.com

I was privileged to attend the Second Sight meeting in January for the branch (See P12 ... Ed). I would like to thank all concerned for the time and effort hosting the meeting in London. Things are a little quiet on the fundraising side at present so we need to go up a gear and make things happen. That brings me on nicely to Stride for Sight and for me to confirm that we are going to coincide our event this year with the national date of Sunday 27th September. Details to follow as will confirmation of the date of our AGM in the near future. Editors Note See the item about ‘Stride For Sight’ later in this edition. We are organising our first nationally co-ordinated event for the weekend of th 26 and 27th September 15

The Radio 4 Appeal RP Fighting Blindness appeal broadcast Readers will know that we were chosen by the BBC for the Radio 4 Appeal. This was made on our behalf by presenter Jeremy Vine and transmitted on 11th and 15th January, as well as remaining on the BBC website for several weeks afterwards. We were told by the BBC that traditionally ‘blindness’ charities do very well with the appeal, no doubt because the radio is a friend to anyone without sight. Indeed we are pleased to report great success both with the fundraising and raising awareness of the charity. The total raised from the appeal was slightly over £15,000. This included donations ranging from a few coins in an envelope to a cheque for £2,000. Most donations were made anonymously, which though understandable is a bit of a shame in that we cannot thank those that contributed. If you are amongst those anonymous donors, thank you very much indeed. The previous time we were featured the appeal raised about £12,000. News Snippets The November Brent Symphony Orchestra concert mentioned in the last newsletter resulted in a cheque for £1,568 credited to our Research Fund.

Tech-savvy member Sarah Harris Casey has written movingly about her RP experience. Her blog is at http://sarahharriscasey.blogs pot.com/

The winner of our Christmas crossword competition was Mrs J Hudson of Rochester. She received a Marks & Spencer voucher worth £50 from our sponsor, BCQ Print.

The Head Office team will now be meeting every Wednesday at 10am. If you call at this time and get the answering machine, please bear with us for a short time. 16

Members’ Conference (AGM) “Planning to 2013” by Alan Foster This year’s Members’ Conference, which includes the charity’s formal AGM, will be held on Saturday 20th June. The event will take place at the Millennium Stadium in Cardiff. Though this might seem ambitious, rest assured we are not expecting to fill all 76,000 seats at the famous Rugby ground! Rather, we are using one of the conference rooms alongside. The Riverside Terrace is an excellent facility, only a short walk from both Cardiff railway stations and with plenty of parking. We are pleased to have found such a good venue which is accessible to people with visual impairment. The detailed programme will be announced very shortly, but will consist of a keynote medical speaker, presentations from several exhibitors, the Trustees’ report for 2008 and plans for the future, and a speaker addressing welfare and support issues. We are also trying to get a speaker from the Department of Health (yet to be confirmed). We are expecting to open the exhibition at 10am and run through until approximately 5pm. Please mark the day in your diary. As well as being informative, the day is a chance for members to have their say, ask questions, and meet other members, the Trustees, scientists, and staff. We hope you will take this once-a-year opportunity to contribute to the future of the charity. Catering and Accommodation We will be providing tea, coffee and biscuits throughout the day and there are a number of cafés and restaurants close to the venue for lunch. Alternatively the venue staff have no objection to members bringing lunch. Closer to the event we will provide contact details for local hotels for those members that might wish to stay in Cardiff overnight. 17

More About Retinitis Pigmentosa and the Roads by Christine Medway In the last issue our article highlighted some of the facts concerning private car drivers. The process of losing your licence for those who drive service vehicles or HGVs can be even more immediate and traumatic, as their livelihood depends on the ability to drive. Health professionals who have to break the bad news feel this to be one of the most difficult parts of their work and often causes more heartache than sharing the initial diagnosis. Most of us would not want to be in their shoes! I received a lengthy account from an HGV driver, who relates the difficulties he experienced with the whole matter, including the lack of response to his communications with officials at the DVLA. Not wanting to open a can of worms, he - and I - wondered if there are many other RP people who have similar stories and would be prepared to share them? There are often calls to the Helpline from friends and family about this issue. For those who no longer drive or have never driven, there is the challenge of staying safe in the hazardous environment outside the home. When I was younger, I was extremely shy and hated the thought of marking myself out by using a cane, symbol or long. Besides which, I needed both hands free for retail therapy, beer carrying or even violin carrying! In other words, I really didnâ€™t want to know or admit to sight impairment. Understandable! But in my early 20s I worked in the claims department of a busy and well known insurance company, dealing with many motor accident claims. Pavements are full of trip hazards, let alone roads full of large, heavy machines driven by people determined to get from A to B without stopping. People who have a sight impairment do well to signal that fact when they take their courage in both hands and attempt to cross the road. 18

Unfortunately, a lot of drivers are not as observant as they might be and need to be reminded that pedestrians are soft and lumpy and do not generally have ‘bouncing’ abilities. Thus anything we can do to heighten their awareness is a positive move in my book. Still unconvinced? Well, then, if you as a VIP are in a collision with a vehicle you may be held in some part responsible if you have not indicated in some way that you do have sight problems. Damages awarded to you may be reduced by a percentage to reflect this factor. Do you remember the government campaign ‘wear something white at night’? Being visible will definitely be helpful. RP manifests in various idiosyncratic ways, resulting in a colourful spectrum of challenges simply finding our way about! Those who lose central vision can often have reasonable mobility, though map reading is not for them. Those who lose peripheral vision might trip over a match stick, but could at least read which brand it is. And don’t let’s get started on night blindness. Please send letters, comments, and (especially) amusing anecdotes to the Editor at Head Office. If you need more information about the driving license 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. Stride For Sight by Michelle Carter In previous years several branches have organised “Stride for Sight” walks to raise money for the Research Fund and as social occasions as well. We all know how successful the walks organised by Colin and Linda McArthur and Yorkshire branch have been! We are now asking everyone to take part in making “Stride for Sight” a national event. The date is the weekend of 26th and 27th September 2009. Please help us by taking part in the walk closest to you and asking your friends and family to do the same. There will be more publicity near the time, and a list of locations for the walks will soon be available on our website www.brps.org.uk. 19

Sailing Two opportunities for VIPs BLIND WEEK 2009 is hosted by The Royal Southampton Yacht Club and organised through Sporting Activities for the Disabled Charitable Trust

Grant Morris from the Trust writes “It’s once again time to start the planning and I am pleased to confirm that this year's South Coast ‘Blind Week’ will start on Saturday 27June 2009 at The Royal Southampton Yacht Club. “If you are visually impaired, and would like to apply for a place to crew on a yacht for the week please contact me by the end of March. Don't forget that sailing experience is not necessary as beginners are most welcome.”

The cost is £160 and you can contact Grant on 0049 08024 4745150. Another chance to sail comes from Wieland Raatz the new VIP Sailing Coordinator at the East Anglian Sailing Trust (EAST). EAST has been running sail cruising for blind and visually impaired people since 1993. On the weekend of May 15 - 17 2009 they will have a fleet of up to twelve yachts cruising on a taster weekend from Suffolk Yacht Harbour at Levington (near Ipswich) aimed at VIPs who have never sailed with them before. The sailing contribution is a modest £50 per person with some travel bursaries possible. A great opportunity for VIP sailing in beautiful Suffolk! Wieland can be contacted on 01473 327556

Save the Dates The Retinal Awareness Group 21st RAG weekend is 24-26 April 2009 at The Carousel Hotel, New South Promenade, Blackpool. Over 70 people have already booked, so if you want to take part please get in touch quickly. Sessions include a research update from consultant Mr Martin McKibbin of St James' Medical School, Leeds. Dr John Gill of RNIB will update us on a wide range of information technologies and Denise Leigh will describe her life as a VI professional singer. For more information telephone Carole Holmes on 01253 404194 or book at the hotel on 01253 402 642. Please state 'RAG Weekend' when booking with the hotel. We look forward to seeing you in Blackpool. *** The Sight Village Exhibition this year is 14th to 16th July at Queen Alexandra College in Birmingham. This is a premier event showcasing technology, support and services for people who are blind or visually impaired. Exhibitors from throughout the world take part and they welcome many thousands of visitors over the three day period. For further information visit the QAC website www.qac.ac.uk/sightvillage *** The British Police Symphony Orchestra and Denise Leigh will be performing a prestigious fundraising concert for us on Friday 30th October at the newly refurbished Butterworth Hall, Warwick Arts Centre. This will be a spectacular event, please mark it in your diary now and watch out for announcements about ticket sales. *** Stride for Sight Weekend is 26th and 27th September (see Page 19) *** Don’t forget the Members’ Conference on 20th June (see Page 17), and an early notification of the date for next year’s Conference is that it will be on 19th June 2010, this time in London.

Volunteers Needed â€Ś Can You Help? We need people to help us with our Information and Support Services, and with the production of this newsletter. Please contact us if you think you can help, or pass this article to friends, family and colleagues who might be willing to give a little of their time to RP Fighting Blindness. Helpliners We need up to three additional volunteers to staff the RP Helpline for one session per week each. If you feel you can use your experience dealing with RP to help others, please let us know. This is a responsible role so training and support will be provided. It is a great opportunity to contribute to our work whilst building your own skills. Contact Carol Holmes at caroljholmes@googlemail.com. Information & Support Committee Our services for people with RP are delivered by a small group of volunteers, and we would like to add two more to this team. Your commitment would be attending two meeting per year plus the odd event, actively promoting the Helpline and other services, and providing a link between the membership and trustees to ensure that plans for our services meet genuine needs. This is another chance to support people whilst building your skills. Contact Carol at caroljholmes@googlemail.com.

Newsletter Editor (or Joint Editor) We need a volunteer to help us produce this magazine. The commitment would be for a few days each quarter, collecting and collating articles, editing and/or writing items, working on the formatting of each issue, and liaising with the printers and producers of the audio edition. You will need to be an advanced user of Microsoft Word or familiar with desk top publishing and have access to a computer. You will also need to have excellent English, an eye for detail and design, and be able to write articles in keeping with this publication. This is quite an exciting opportunity to demonstrate your skills as we are hoping to develop the magazine further over the next few issues. Contact David Head on 07720 444084 to discuss this further. 22

Don Grocott TD MA FRSA For some time there has been a vacancy on the RP Fighting Blindness Board of Trustees, but behind the scenes the Chairman and others have been working to recruit someone with the relevant experience. We are pleased to report that Mr Don Grocott has accepted a nomination to join the board, a move which should be ratified at the Trusteesâ€™ meeting in April. Don currently holds the Presidencies of the Federation of Dispensing Opticians and of the Association of Optometrists. He joined the optical sector on becoming Marketing Director at Bausch & Lomb in 1979 and was appointed Managing Director in 1980. In 1985 he became Managing Director of the Nissel Group, a major manufacturer of contact lenses.

Carole Holmes MBE One of our hardest working volunteers, Carole Holmes, has been awarded the MBE in the New Yearâ€™s Honours List. This was for services to visually impaired people. As well as her work for RP Fighting Blindness running our Helpline and supporting the North-West Branch, she works for several other charities on a volunteer basis. Carole has RP and is a long standing member who many of you will know well. The honour is well deserved and I am sure readers will join us in congratulating her.

He therefore brings strong business acumen to the board as well of an understanding of the science of the eye. His appointment brings the number of Trustees to its full establishment of ten.

Carole will receive her MBE from Her Majesty the Queen in March

We We have places available on major London runs in 2009 and on the London Marathon in 2010. If you are feeling fit and would like to take up a place please contact Michelle Carter on (01280) 821334 23

Vitalise Holidays by Alison Wadley of Vitalise Throughout the year the charity Vitalise provides holidays and breaks for visually impaired people in the UK and Europe, as well as adventure treks to some of the world’s most spectacular destinations, such as Australia, Africa and the Americas. Vitalise would give any holiday company a run for their money, their adventures ranging from pony treks to opera, cities to mountains, ballroom dancing to off-road driving! VI holidaymaker Joy Philippon paraglided from a mountain on a recent trip to Turkey. She said: “We were fitted into our harness and strapped onto our pilot. I was waiting for something to happen then he said ‘WALK’. I heard him loud and clear, and walked - right off the mountain! “I was certain I would feel myself drop but in one great rush I was hauled upwards and outwards from the mountain, and it was as if I was between heaven and earth. I didn’t know what I would touch first. It was a wonderful feeling, one of the most thrilling experiences I have ever had.” Vitalise Holidays was set up by national disability charity Vitalise to offer tailored holidays to VI people. A representative accompanies each group and so that they get as much from their holiday as possible, each VI holidaymaker is accompanied by a sighted guide. The guides play an important part, and usually return as enriched by their experience as those they are guiding. One sighted guide said: “Whilst out walking one day with a blind friend of mine, she suggested that I become a sighted guide as I was able to verbalise well. By this I thought that she meant that I was talking too much! What she actually meant was that I could describe what I was seeing so that it came alive for her. I have been a sighted guide for over ten years now. I have walked the Inca Trail, touched the Terracotta Warriors and heard jazz in New Orleans. I help the VI holidaymakers make sense of currency and menus, guide them round our destinations, but most importantly I describe everything so that it comes alive.” The Vitalise Holidays brochure is available in large print, Braille, CD and 24

by email in PDF or Word. For a free brochure or for information about being a sighted guide call Vitalise Holidays on 0845 330 0149 or visit www.vitalise.org.uk. You can down-load the brochure or access it via screen-reader. Note: Vitalise Holidays have provided a £75 crossword prize this issue, see page 26 … Ed Talking of Adventure ...

Gift Aid

The Trek the Sahara team leaves for Morocco on March 7th, by the time you read this they will be in the scorching heat earning your sponsorship money.

One or two donors have asked us how Gift Aid works. This is the method by which we are able to reclaim income tax on any donation made by an individual provided that they pay tax. For example, a donation of £10 is worth £12.80 to the charity in this case.

Joining our CEO David Head on the trek are Jim Adamson, Steve Bateman, Mark Baxter, Alan Chamley, Ian Cunningham, Graham Drew, David Gibson, Bev & Steve Hollingsworth, Steven Howarth, Nicola Jones, Helen Leivers, Fiona Nichols, Richard Padmore, Veronica Perrin, Chloe Scaplehorn, Toby Warren, Patricia Waterfield, Chris Woodhead, Karen Young, and a team from Channel 4!

Often a sponsor form will include a simple box to tick, and that’s all it takes. Otherwise you can simply state on the back of a cheque that you are a taxpayer and that you would like us to make the claim.

Recognise a name? Then sponsor the group by following the link from the website or sending a cheque to the office payable to RP Fighting Blindness with the envelope marked “Sahara”.

However it is important to note that gift aid can only be claimed on individual donations, not those made on behalf of others, even family members. For example, if you send a cheque for a donation or subscription it needs to be on a cheque drawn on an account in your own name, otherwise we cannot claim the tax back.

** If you have not paid your 2009 subscription yet please see Page 2 25 **

RP Fighting Blindness Crossword No 4 Across

Down

1. Country (6) 2. Old measure of length (5) 8. To prepare for impact (5) 9. Bunnies (7) 10. Ousted (7) 11. Lazy (4) 12. Large species of deer (3) 14. Sporting side (4) 15. Midday (4) 18. Large species of bird (3) 21. Globes (4) 23. Horizontal wall braces (7) 25. Crack in rock or ice (7) 26. Municipality of Belgium (5) 27. Innate knowledge (5) 28. Soviet port/naval base (6)

1. Dukes and the like (6) 2. About 5pm (7) 3. Extra hours worked (8) 4. 6-sided dice shape (4) 5. Unable to see (5) 6. Fabric decoration (6) 7. Business or skill (5) 13. Raised to the Order of the Garter (8). 16. Threatening (7) 17. Has few calories (3,3) 19. Below (5) 20. Ms Gabor (3-3) 22. Fundamental (5) 24. To kick, or to push your boat in Oxford (4)

7 8

10 13

17 21

Send your grid to: Members Crossword P.O. Box 350 Buckingham MK18 1GZ

11 12

18 22

WIN ÂŁ75 in holiday vouchers, donated by Vitalise Holidays (see article on page 24)

16 20

Name: ........................

Tel: .............................

24 25

Postcode: ................... 27

Closing date is 1st May

TV Star Louisa Lytton Joins Our Fundraising Team by Michelle Carter ‘Eastenders’ and ‘The Bill’ star Louisa Lytton supported us during her recent panto appearance as Peter Pan in Milton Keynes. Louisa understands our cause well as she has a cousin with RP. Fundraisers Jack Gough and Lauren Carter were joined by the star on three occasions. Louisa, who also appeared on ‘Strictly Come Dancing’, collected donations and signed autographs after each performance. Cast members including comedian Andy Ford also helped, raising £590 for the Research Fund. Louisa said "The effect of RP on families is awful and anything we can do to help stop it for future generations has got to be worthwhile." Our photo shows fundraisers Jack Gough and Michelle and Lauren Carter with Smee (Andy Ford) and Peter Pan (Louisa Lytton). Articles for the Newsletter Members and Branches are invited to send news items for inclusion in this newsletter each quarter. • Messages MUST be sent to us in electronic format using MS Word or similar. Photos in JPG format are welcomed though we cannot guarantee they will appear. • If you write a member’s article we might use it on our website as well, unless you stipulate otherwise. • We can’t guarantee insertion (but we’ll do our best) and we reserve the right to edit your text to fit. • The deadline for the summer issue is 10th May 2009 27

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