Look Forward issue 126 - Spring 2008

The Newsletter of the British Retinitis Pigmentosa Society

In Your March (Spring) 2008 Issue No 126

Letter from the Chief Executive .. ..

Research Update: RP and Bright Light News and Views from the Branches Membership Survey .. .. .. ..

Landrower Challenge .. .. .. ..

Justgiving .. .. .. .. .. ..

Retina International Congress .. ..

Desert Trek .. .. .. .. .. ..

More News from the Branches .. ..

Retinal Implants (Clinical Trials) ..

Writing Your Will .. .. .. .. ..

Scotland and Wales .. .. .. ..

The Helpline Team .. .. .. ..

Board Changes .. .. .. .. ..

Members’ Conference (AGM) .. ..

Bits & Pieces .. .. .. .. .. ..

RP Singer in Birmingham Show ..

RAG Weekend .. .. .. .. ..

Crossword .. .. .. .. .. ..

.. .. .. .. .. .. .. .. .. .. .. .. .. .. .. .. .. .. ..

3 4 5 7 8 8 9 10 11 13 14 15 17 18 19 20 23 23 24

This issue sponsored by

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Newsletter Editor Christine Medway.

British Retinitis Pigmentosa Society BRPS (also known as RP Fighting Blindness) 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 eye that lead to deterioration of vision and often blindness.

Membership Subscriptions The membership fee is £15 and was due on 1st January. If you have not yet paid for 2008 please send a cheque payable to ‘BRPS’ to the address below. Any donation above £15 is very welcome of course.

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 and friends of BRPS each quarter. Tape, Braille or e-mail Copies are available on request free of charge from the address below.

Articles for Summer Edition Please note that articles must be received by the Editor by 21st April for the June (Summer) 2008 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 Society cannot accept responsibility for errors.

Office PO Box 350, Buckingham, MK18 1GZ E-Mail: info@brps.org.uk

Tel: 01280 821334 Charity No. 271729

This issue of your Newsletter has been kindly sponsored by our printer Buckingham Colour Quest.

If you would like your company highlighted here you can sponsor the next edition of this Newsletter. Email info@brps.org.uk for details.

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Letter from the Chief Executive Dear Members, In a fantastic 2007 we achieved a total income of just under £1.2m. This was your best year ever – partly due to significant legacies - and puts BRPS in a very strong position.

Congratulations are due to the branches for generating record amounts too, and my thanks to you all for this support.

As a result we are holding a very healthy looking Research Fund, so our plan during 2008 is to increase the number of projects we stimulate and finance, whilst retaining good quality, ‘cutting edge’ research work.

We also want to generate another £¾m over the year and so increase this activity still further in 2009.

But one step at a time!

Those of you with access to the internet, or that know me, will be aware that I am keen to harness technology to raise our profile with donors of all types. I also believe that technology can help us use the money we generate effectively, by attracting the attention of scientists – not just in RP but also in related fields. This stimulates interest in fighting the disease, and generates quality applications for funds. We will be improving and broadening our communications with the scientific community, and the new website (which is being developed as I write this) will be more effective in this regard too.

I’d like to write several pages here - about our plans for 2008, the results of the recent survey, the clinical trials of retinal implants (see item on Page 13), our fundraising plans, the new website, changes to the board, technology, volunteering opportunities, and lots, lots more.

Limited space prevents me doing so, but you can read more on my blog at http://brpsnews.wordpress.com and, as ever, I welcome calls and emails if you have any questions at all about our work.

Thanks again for your continued support.

David Head MBA Chief Executive

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Research Update: RP and Bright Light

by Selwyn Higgins By the time you read this, we should be heading towards longer and brighter days. Since the early 1980s we have been warning members of the danger of exposure to ultraviolet light (UV), as it has been known for some years that UV is a contributory factor in cataract formation.

Soon it became apparent that this is not the only problem and that the retina could also suffer. In 1985, we advised members to go a step further and cut out UV by wearing good sunglasses with a red or orange tint to block out blue light. It was suggested that sunglasses should cut out any light with a wavelength less than 450 nanometres, information that is carried on good sunglasses.

A recent release by Retina International includes a paper by Professor Charlotte Reme of Zurich, which supports these findings. Studies on mouse and human models appear to confirm that exposure to bright light can accelerate the progress of autosomal dominant RP. In adRP, a mutation in the rhodopsin gene is a major factor in the problem.

Following on from this, there is now a growing body of opinion that all bright light is harmful for people with certain types of RP.

It has been shown that moderately acute light exposure leads to severely reduced ERG responses and apoptotic death of photoreceptor cells.

In the summer of 2005, following work by Cornell University, Retina International issued a paper recommending that people with RP should avoid all forms of bright light, especially if the RP was autosomal dominant. We carried an article suggesting that members should be wary of intense examinations by ophthalmoscope and should ask the optician to keep the period during which light is shone into the eye as brief as possible.

The chemical changes causing this loss of photoreceptor activity are not yet clear but evidence seems to suggest that people with RP should avoid strong light, especially if they have adRP. The advice is to avoid exposure to sunlight and blue skies by wearing good quality orange or red sunglasses and avoid facing any bright light.

Consider a cloudy British summer a good friend.

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News … Branch News … Branch News…

News and Views from the Branches From our volunteers across the UK CROYDON Joan Raccagna Firstly, many thanks to those who sent me Christmas cards. I hope you all had a wonderful Christmas. A Christmas cheque for £1000 was sent to Head Office and thank you for making this possible.

We are planning two collections and need volunteers to rattle those cans; if you can help on Saturday 5th April or Sunday 28th September in Croydon please let Joan know on 0208 660 8164.

On 23rd February David Head our new CEO joined the Croydon branch meeting at The Bedford Hall. David was able to give us some feedback from the recent members’ survey and we also discussed some new fundraising ideas for 2008. ~~~ ~~~ ~~~ DEVON & CORNWALL Julie Allen I sincerely hope that you all had an enjoyable Festive Season.

Sadly, I couldn’t attend the Christmas Dinner at The Devon

Motel due to work commitments, but a large number of you were able to. I am told a good time was had by all. Thank you to all who donated prizes and to those who bought draw tickets.

In the previous edition of The Newsletter, Mrs Gale’s Cream Tea was mentioned. I should elaborate; Mr & Mrs Gale of Chevithorne Farm held their 10th (annual) Cream Tea Afternoon in July. Although the weather was far from kind, many people from this branch and neighbouring Somerset Branch enjoyed the gastronomic afternoon. No one got wet, as with quick relocation to one of the farm’s barns, everyone was able to stay dry. In addition to the wonderful fare there was also an auction, and with all monies now collected Mr & Mrs Gale’s Cream Tea Afternoon raised £1,382 for the BRPS research fund.

Could anyone find a home for a collection of LP records? Many of you may know Roma whose late husband Bert was a member of the Reader’s Digest Record Club. There are approximately Page 5

500 records in his collection and Roma would like to give them to someone who has RP or to an organisation that has an RP connection. Delivery could be arranged in Roma’s local area. If you are interested please contact me at joolsallen@hotmail.com and I will then contact Roma. ~~~ ~~~ ~~~ AVON Pauline Fraser The past year has been a fairly quiet one for us. However early in the year Chris Taylor raised £487 when he ran the Cricklade half marathon. A total made even better by his employer who then matched that amount! His son also raised a further £20 for an associated fun run. Well done.

Rachel King (our committee member organising street and supermarket collections) and her family ran in the Pensford Fun Run, raising £243.

I would like to thank everyone who has taken part in the collections. Please phone Rachel on 0117 9861603 if you can help with collecting in 2008.

Our annual quiz night was held in September at Shirehampton Golf Club - another great success.

The year ended with a well supported Christmas lunch at the

Jury’s Hotel. We held our AGM after the meal, saying a sad farewell to our chairman, Ben Pullan. He has done a wonderful job for the past 8 years. Ben and his wife are moving to Newcastle and we wish them all the best.

Stewart Fraser was elected as our new chairman, with Arthur Chatters as treasurer and me – Pauline Fraser – continuing as secretary.

Just over £5000 was sent to the research fund in 2007. ~~~ ~~~ ~~~ ESSEX & SUFFOLK Steve Carrington Hello everyone, great news on the fundraising side. Jo from Hornchurch raised over £800 at the Disco night she organised again. Don’t be disappointed Jo that you didn’t reach the £1,000 that you would’ve liked, it was a great result - if only a fraction of members managed to organise an event and raise £800 each year we would be sailing!

Stride for Sight and our AGM dates should be announced very soon so watch out for news later of these important events. It will be nice to see some more new faces or even a few old ones too!

Happy fundraising everyone.

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Thanks for a Great Response to the Survey From the Head Office Team In December a survey was sent to all members asking for views on BRPS and our work. The result was a huge number of responses – about 1,250 of them! The intent was to help us plan 2008, and improve consultation with you, as well as update our records of contact details. Full analysis will take time, but here are a few highlights ...

A brilliant response from members updating their details, including 57% providing email addresses, and 88% giving phone numbers and other information.

We identified a need to produce the Newsletter on CD as well as tape and print, and a demand for a monthly email bulletin.

Over 170 people signed up for email volunteering alerts Unsurprisingly, 85% of respondents want to be linked to branches. 34% of you would also like online membership.

Most of you cited getting information (34%) or helping to find a cure for RP (25%) as the main INITIAL reason for joining.

You rated the staff, Newsletter and Helpline very highly, but thought the website needs improvement (this is in hand).

92% of you think that BRPS is good value for money at ÂŁ15 A majority of you agreed that we should retain focus on funding research and providing information; more extensive welfare services could be developed if separate funding could be found. Most of you agreed that we should have a lobbying role.

Over 200 of you said you would fundraise, and nearly 200 said you would write a will leaving a legacy to BRPS. Over 200 indicated a willingness to support local branch committees.

80% of you have RP yourselves.

31% of you are working full or part time.

Only 3% are from black or minority ethnic (BME) background.

58% of you could not say what type of RP you have.

Our last question asked you to write a few words on the impact of RP on your lives. 873 people responded to this, ranging from a brief sentence to lengthy essays. Some of the material is emotive, some more practical. Many wrote about family, carers, employment, relationships, and the loss of a driving licence is a common theme.

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Landrower Challenge makes £20,000

by David Head In the last edition there was a note that Scottish member David Macmillan had raised £5,500 for BRPS ‘rowing’ around one of the Lochs. In fact, sponsorship finally topped over £20,000, and the event stood out because of its innovative nature as well as the amount raised.

David and 17 others completed a most unusual trip - 22 miles in 2 hours and 37 minutes along the cycle track from Kilmacolm to Lochwinnoch in Renfrewshire. They did this using machines, specially designed and built by David, that turn a rowing action into rotary power at the wheels. The ‘Landrows’ were powered by members of the local rowing club and David’s friends and family as part of the celebrations of the Society’s 30 years.

By collecting pledged money all year David reached well over £20,000 - four times the original target. The combination of technical challenge, fundraising challenge, and physical challenge all being overcome in support of our fight against RP is fantastic. All the money raised has been allocated to the Research Fund.

JustGiving Did you know you can use Justgiving to raise money online in two ways? The online donation scheme has several advantages, particularly the ability for people to donate using a bank or credit card, and an automatic claim of tax relief (gift aid) on our behalf.

Anyone can donate to the Society at www.justgiving.com/brps, or you can set up a special page to allow people to donate to us and have their contribution recorded as sponsorship for your event or challenge. From www.justgiving.com/brps just follow the very easy to use links and instructions. David’s challenge above is a great example at www.justgiving.com/landrowerchallenge. Once done, it’s very easy for your supporters to use and a lot easier for you than asking for payment of pledges in cash.

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Retina International Conference 2008 - Helsinki

by Stephen Jones, Retina International Representative As mentioned previously, the 15th Retina International World Congress will take place in Helsinki on 4th and 5th July 2008.

The Retina Finland website link for up to date information - in English - is http://www.retina.fi/RI2008/congress.html We hope that many BRPS members will attend this important event. It provides a wonderful opportunity to catch up with the latest research news while also being able to attend sessions on all sorts of other topics plus, of course, enjoying opportunities to meet and socialise with people with RP and similar conditions from around the world.

Don’t worry about language issues, the official languages of the congress are both Finnish and English.

I realise of course that flight costs and expenses are an issue but as this is a European venue the costs for members are less than for many RI conferences. The registration fee is €100 per person (currently equivalent to about £74) if you take advantage of the ‘early bird’ discount by booking before 31st March, after which the cost is €130 (£96). The fee includes a place at the congress, and lunches, but not the Gala Dinner which is extra. These costs are listed on the website, including examples of hotel and hostel rates.

The official programme and list of speakers has not yet been released but I have heard strong rumours that our own Prof Robin Ali will be among the speakers and that Prof Alan Bird will attend in order to receive the RI award announced at the 2006 congress.

Congress bookings should be made with Retina Finland but please inform the BRPS office when you make a booking because we would like to have an idea of how many members are attending, and we will look out for each other while we are there.

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A youth programme will also take place from the 1st to 6th July. Our BRPS Youth Representative, Chloe Scaplehorn, is planning to attend the event and has already received a good level of interest from our youth members. The estimated cost of the youth meeting is €350 (£260) including accommodation, meals and the cost of attending the congress. More information is available online at http://www.retina.fi/RI2008/Youth2008.doc If you would like to discuss the congress with me or the youth programme with Chloe, you can obtain our email addresses or phone numbers from the office.

I hope to see many of you in Helsinki.

Desert Trek BRPS is organizing its very first overseas ‘charity challenge’, which will take place in 2009.

will be sent to members soon, but if you would like to register an early interest in taking part, email david@brps.org.uk, or call the office.

The trip will probably be for 10 days or so, and take in the Berber culture as well as the spectacular and challenging Sahara.

We are planning to take 30 people trekking in the Sahara Desert. Full details of the trip and the fundraising involved

The trip will be designed to be fully accessible to people with visual impairments, and with a view to partnering up people who need guides with willing volunteers.

Snippet: Member Joan Merchant’s husband who is blind recently acquired a talking mobile phone and would like to offer to pass on information about this to others who are considering the same. You can call Mr Merchant on 01388 458425

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News … Branch News … Branch News…

More News from the Branches From our volunteers across the UK HAMPSHIRE Steve Harris We rounded off 2007 with a very successful collection at Hedge End in November, raising £1068. This brought the total sent to the Research Fund to £18,000 - another excellent year - so once again we must say a massive “Thank you and well done” to everyone who was involved in raising it.

We now need new people on our committee. So, if you know of anyone who might be persuaded to join a friendly, informal group and bring some fresh ideas for branch activities, please phone me on 023 8047 6894, or email hampshire branch@brps.org.uk, and I will be happy to let you know what’s involved.

Our AGM this year is on Saturday 13 September, which is a little earlier than in previous years. Please make a note of this date in your diaries and be sure to come along, since we have invited a well-known medical speaker. He will be able to bring us all the latest

research news, including progress on the clinical trials. ~~~ ~~~ ~~~ MIDLANDS Bev Hollingsworth What a great year we had, kicking off with the launch of the TLC Lottery which now has 111 members and raised £1,617. Some of our members have won already! If you would like to join, call Rita on 01902 738193 or e-mail Bev on bev.hollingsworth@btinternet.com

We also ran skittles, Summer and Christmas balls, a Firewalk, Andrew Howe’s marathon, music evenings, Christmas fair and a Chinese meal. We raised just over £21000 for research. I would like to say a Great Big Thank You to everyone who helped and supported us. Well done everyone.

Our member Helen Rourke has produced a CD which costs £10, with all proceeds being donated to BRPS. She has also entered ‘Britain’s Got Talent’ and is playing in ‘Annie’ at The Crescent Theatre, Birmingham..

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Walking on Fire

Midlands now wants to match if not better the 2007 figures by holding lots of events including a ‘Beauty Evening’. Even if many of us can’t see how we look, we still want to be and feel beautiful! Also a ghost walk, party in the park, a clay pigeon shoot, another firewalk, toy boot, sky diving and lots more.

To join in just give us a call! ~~~ ~~~ ~~~ SOMERSET Tom Graham We had a good year, sending £6,000 to the Research Fund.

Apart from collections, our enterprising supporters did parachute jumps (Paula Conway £500), road runs (Lyn Davies £180), and donated birthday collections (Wyn Rawlinson £247). We were very grateful also, for a bequest from the late Helena Smith (£275).

Our members are scattered around our very rural county, so we intend to try holding periodic meetings away from Taunton.

In fact we had our autumn meeting in Yeovil, the main

item being a recording of the research session of the York AGM. Yeovil members have been active with collections and we are indebted to Brian Whatmore for organising these. ~~~ ~~~ ~~~ HERTS & BEDS Jon Addison At an EGM in December, all of our committee positions were changed. I would like to thank Irene Townsend for taking the chairman’s role and keeping the branch going, Annie Bateman our secretary for three years, and Fred Foley who has now stepped down after many years as branch treasurer.

I have taken over as chair, with my wife Nicky as vice-chair.

Tracey Milligan is secretary and Laura Addison treasurer.

I will contact H&B members in the new year. In the meantime I’m happy to hear from anyone with ideas about fundraising or plans for your branch. My number is 01707 330140. ~~~ ~~~ ~~~ YORKSHIRE AND DISTRICT Richard Padmore A great result for September's sponsored walk with a total raised of nearly £1600. Wendy Page 12

Nicholson and family collected £440 which is brilliant. We're now looking for ideas for our major fundraising activities this year - why not come along to our Branch AGM on 12th April and bring your ideas. I'm hoping we can see more people at our meeting this year,

especially some of the younger members. The AGM will be at Centenary House North St Leeds, at 1pm but the room will be available from noon. Guest speaker yet to be confirmed.

Call me on 01709 700198 or email richandkay@gmail.com for more details.

Patient Information Day Clinical Trials of Retinal Implants News and an Invitation from Moorfields As many of you will know, clinical trials of retinal implants enter a new phase this year.

Second Sight, a US based company are working with Moorfields and other eye hospitals across Europe.

Members for whom we have email addresses would have already been invited to a patient information day. If it’s not too short notice by the time you receive this Newsletter, and you would like to attend, please call the office on 01280 821334 as soon as possible.

The event is a chance to learn more about implant technology, and perhaps even to think about getting involved in the trials. The date is Saturday 8th March at 2pm, and the session is being hosted by Dr Andrew Webster at Moorfields. Note that Second Sight is a commercial company, and this work is not being funded by BRPS, though we have funded some of Dr Webster’s other work.

It’s all very exciting, but please remember that this is an information day about early trials, treatment is still a long way off - several years at least, and not all RP patients will be suitable for the trials, for various reasons.

Before attending the event, we recommend that you visit the Second Sight website www.2-sight.com for more information.

A brief BBC report is also online at http://tinyurl.com/2kz7pw Page 13

Writing Your Will

by Martin Gleeson We would all like to be remembered when we are gone. If you make a gift to the BRPS in your will, you will be part of the fight to make retinitis pigmentosa (RP) treatable in the future.

Did you know that if you die without making a will, your estate will be governed by intestacy laws, which don’t allow gifts to individuals or charities? Also, if you are divorced, separated, not married to your partner, or not registered as civil partners, you have a particular need to make a will.

Irrespective of your intentions with regard to a charitable legacy, it is wise to have a will in place to ensure clarity for your family, speed up resolution of your financial affairs, ensure the future of particular possessions, and minimise tax liability. Like Trustee Colin McArthur (pictured signing his will) we hope all members will think about this and be encouraged to ‘put affairs in order’.

All gifts will be welcome, and you can be assured that the BRPS keeps administration costs down to a minimum. Money specifically left to our Research Fund can in fact only be spent on medical research aimed at finding a cure or treatment for RP. The cost of making a will varies greatly from one firm of solicitors to another, so shop around. The cost of making a simple will is about £75. If you have already made a will, and wish to add a further bequest to it, you can add a codicil to your will, and this will usually be cheaper than rewriting the will.

If you have any general queries, you are welcome to telephone the BRPS’s legacy officer, Martin Gleeson, on 0151 283 0223 or send an e-mail to legacies@brps.org.uk.

Snippet: Did you know you can now sign up to get the new BRPS monthly e-Newsletter. Email info@brps.org.uk for the link.

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ews … Wales News … Scotland News…

Letters from Wales and Scotland

by David Morgan and Jim McLean May I start by wishing all members a Happy 2008 and we hope you are now recovering from the festive season’s excesses.

Here in Wales we are looking forward to the coming fundraising coffee morning in Carmarthen on February 23rd and we hope to see as many of you as possible to help make it a great success. Please contact the branch for details if you think you might be able to join us.

It is with deep sadness and regret that I report the sudden death of John George, one of our branch members from Cardigan. He and his lovely wife Muriel were involved in a road accident in which John was killed and Muriel was severely injured. At the time of writing this Muriel is still a patient at the Royal Shrewsbury Hospital. (more about this in a separate item below … ed) On behalf of all our members I would like to extend our heartfelt sympathy to Muriel who has lost a dear companion and much loved husband. John is also missed by us and many other friends.

David Morgan ~~~ ~~~ ~~~ A happy 2008 from all at the East of Scotland branch to you and yours.

Our meetings are set up for next year and I am looking forward to them to see weel kent faces and hopefully some news ones too. Our branch is doing very well and meetings are well attended, so very soon we’ll be putting out our own newsletter to our troops with those details.

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I’d like to mention our last meeting of 2007. Our guest speaker Dr Kevin Chalmers spoke to us about his work in research; how he was involved with other European researchers and how knowledge was being shared amongst guys like him. If I’ve interpreted my notes correctly (‘cause it looks like I’ve held the pen between me big toe and the one next to it!) he also talked about a project he was on involving Industry and scientists working together.

I would also add something that came to me over the holiday period whilst I did some work for Head Office, whilst doing this it occurred to me that there is another group of folk affected by RP that are quite the unsung heroes; namely our partners, wives, husbands et al, the folk who look after us on a day to day basis. The Joan’s, Jim’s, George’s, Ann’s, Jo’s, Bill’s, Gordon’s, Mary’s, Eileen’s & Peter’s, etc. of our world, of whom we RP’s are hellufa proud, can I say. If it’s not too bold of me to speak for a good number of people, THANK YOU. Jim McLean

Update on Muriel George

by Kate Samwell Muriel has now been moved to a small hospital in Cardigan and, we have heard, is receiving lots of visitors - even, at one point, a small choir! Muriel is continuing to improve and is an inspiration to all those around her. She even arranged her own transport to the Cardigan hospital - by air, rather than ambulance.

Despite having to use a wheelchair, Muriel was able to arrange and attend John's funeral and this took place on Wednesday, 6th February at the Methodist Chapel in Cardigan. A group from the South Wales Branch attended the funeral and, although we were not with her, our heartfelt thoughts and prayers were with Muriel and her family at that time.

Muriel still has a long way to go, but, with her indomitable spirit, we know that she will win through.

Our best wishes when you read this Muriel.

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The Helpline Team

by Carole Holmes Blackpool in late October can be quite bracing, but also full of people who come to admire the illuminations. A few of us attending the Helpline Training Weekend braved the wind and rain to stroll out along the Golden Mile. We stayed in a very welcoming hotel not far from the seafront, The Henderson Hotel. Hugh and Veronica who run the hotel for VIPs are thoughtful and helpful hosts.

It is a requirement of the Telephone Helpline Association, of which we are a member, that training of volunteers takes place regularly.

Steve Goulden and Brian Lay had planned this session, which this year focused on handling difficult and stressful calls. I took the main session and started by describing a very complex call involving legal implications, issues of confidentiality, and time pressures, as well as the evident distress of the caller. Once in a while callers in distress are on the line and we have to know that our Helpliners can maintain a professional manner and deal with the call effectively.

Sadly, it was the last year that Steve and Brian were in post. They are missed by the team and we thank them for their hard work and dedication. For the time being I am acting as Helpline manager.

I would like to thank the Helpliners who are covering two slots during the week as we are rather short of daytime members just now. They are making sure the service is running smoothly.

A member of the Helpline Team, Muriel George, is recovering well following a horrific car crash and the loss of her husband, John. All their friends from the Helpline send their love to Muriel and have been remembering her in their prayers.

The Helpline hours are Monday – Friday 9.30am - 1.00pm 1.30pm - 5.00pm 6.00pm - 9.30pm There is an answer phone at other times

0845 123 2354 helpline@brps.org.uk Pic: the team is equipped with the latest technology Page 17

Changes to the Board of Trustees

By Lynda Cantor MBE, Hon President Recently two Trustees, Mary Guest and George Thompson, retired from the Board. Both had held key positions within the Society.

Mary Guest Mary was a founder member. Then a teacher of the deaf, she attended the very first meeting. Although she had no personal connection with RP, throughout the past thirty-two years, Mary has held many positions within the Society. Through her inspiration a welfare section was formed and, for many years, she was chairman of the Welfare Committee. Mary also edited this Newsletter in the early days. She has always had a keen interest in caring for the well-being of people with RP, especially those with the additional problem of a hearing loss. For the past 25 years, Mary has headed up many projects at Sense for the Usher Syndrome group and is recognised world-wide for this work. Please join me in wishing Mary a very happy retirement. Many thanks, Mary, for the contributions you have made to our cause.

George Thompson We were fortunate that George responded to a plea for a National Treasurer back in 1993. George has a son with RP and was keen to help our cause. The amount of work that George has taken on for us, supported by his wife Jo, has been phenomenal. He has managed the Society’s finances on virtually a daily basis and, every year, completed all the paperwork necessary for the annual audit.

This has always been a huge task, but even more so in recent years with increasing Government legislation and accounting rules.

All this and George still managed to run his own business. George, what would we have done without you? Thank you so much.

New Trustees I am delighted to announce two new Trustees. Our new Treasurer is Mr Henry Bennett. Henry is a Director of Finance at The World Society for the Protection of Animals (WSPA) and previously held a similar position at RNID. He brings a wealth of financial and charity sector experience to the Society at a time of growth.

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Secondly, I am pleased to welcome our long standing Fundraising Manager Colin McArthur to the Board. I know members will be delighted at this. A stalwart of the organisation, Colin’s experience and knowledge will be a great asset to us in the future.

Vice Chair Roger Green, who has been with the organisation in various capacities for many years, and (like Colin) has RP himself, has been appointed Vice Chair of the Board.

Again, it is an asset to have such a wealth of experience working for us in this role.

As a result of these changes the board now consists of 9 Trustees: Sir Alan Rudge (Chair) Roger Green (Vice Chair) Henry Bennett (Treasurer) Lynda Cantor (Hon Pres) Prof John Marshall (MAB)

Prof Tony Moore (MAB) Lord Mark Birdwood Sophie Montgomery Colin McArthur

The Trustees will be seeking to fill the remaining vacancy in 2008

Member's Conference (AGM) Date Confirmed

by Alan Foster After a successful AGM in York last year, we will be returning to London this year on June 14th. The venue is the Friends’ Meeting House on Euston Road, where we have been fortunate enough to be able to book the Main Hall – a very impressive venue, with a lovely internal courtyard and external garden area for refreshments and breaks during the day. The programme for the Conference will be similar to recent years, with an exhibition and refreshments from 10.30am and the AGM and other sessions after lunch.

The Friends’ Meeting House is very close to Kings Cross and Euston Stations (and St Pancras International for our Eurostar visitors!). More details will be provided in the e-Newsletter and Summer Newsletter but members who intend to stay overnight in

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London should be aware that June 14th is Trooping of the Colour day and hotels may be busier than normal.

The title of the event has been ‘The BRPS AGM’ for many years and it will of course continue to be the meeting at which the formal business of the Society is carried out. However the other sessions during the day have really been more a conference and we now feel that the event is more accurately described as our Members’ Conference and AGM. The emphasis on conference should make it easier in future to provide a wider range of presentations and exhibition space.

Please mark June 14th in your diary, it is an important date in our calendar for members to get together, meet and hear from medical speakers and researchers, talk to our trustees, and this year, for the first time of course, meet our Chief Executive David Head. We hope to see many members, and their families, there on the day.

pieces … News Bits & Pieces … News Bit Newsletter Editor Our Newsletter Editor Christine Medway will be working with the Helpline team later this year, re-instating regular communications between the team and branch welfare officers. Consequently an opportunity exists for a new volunteer to join the Management Committee as Newsletter Editor. If you think you might like to take this on, please email David at david@brps.org.uk to learn more.

The Newsletter Editor needs to liaise with a number of sources of material each quarter, manage the deadlines, gather together and edit the material, write some articles, and then work with our printer to produce each edition. The office in Buckingham deals with audio transcription and distribution. Four meetings each year are held in London and all expenses are covered.

Helpline Leaflets and Cards We would like to get copies of our new leaflet ‘About RP’ and our planned Helpline leaflet and cards with the Helpline number on into eye clinics, ophthalmology departments, opticians and doctors’ Page 20

surgeries across the UK. If you don’t see information about RP where information about RP should be, please let us know and we will send you a supply when they are printed.

Your Personal Donations A quick note to thank those of you that sent us additional donations with your membership subscription cheques in December and January. This totals several thousand pounds and makes a real difference. Thank You! Newsletter Sponsorship Would your employer or a business(wo)man you know like to sponsor an edition of the Newsletter? In return for a contribution to costs we will include a logo and a note of thanks, and make links to our sponsor from our website. ÂŁ500 will secure sponsorship of the Summer Newsletter. Please ask your business friends!

Website Redesign Underway Last year we received a grant, separate from the research fund, to allow us to update and redesign our website (www.brps.org.uk).

This work is now underway and the new site will be launched in the first quarter of 2008.

The work involves a complete redesign, an investment in new technology (for techies amongst you, web 2.0), and a full re-write of all of the medical and technical material. We have commissioned a web design company called Granite 5 to deliver the site, and Dr Michael Michaelides at Moorfields Hospital to review and rewrite the medical content. See a preview at http://brpsnews.wordpress.com) North West Branch to Host Prof Robin Ali

by Kevin Johnson, NW Branch Professor Robin Ali from the Institute of Ophthalmology will deliver a presentation at The Christopher Grange Rehabilitation Centre, Youens Way, Liverpool on Saturday 7th June 2008. This forms part of the North-West Branch AGM which commences at 1pm.

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North West Branch is also running a social weekend on 13th to 15th June at the Windermere Manor Hotel, an 'Action For Blind' run hotel situated close to the town of Ambleside. This is a popular event so contact Carole Holmes on 01253 404194 to book.

Other events in the ‘patch’ include collecting at Nantwich Jazz Festival (20th - 24th March). Any jazz fan who can help should contact Nick Goodwin on 0161 973 2513.

Crossword Clues See page 24 Across 1. Back of the eye (6) 4. Flower and sports car (5) 8. Town in Italy (5) 9. RAF symbol on their aircraft (7) 10. Parisian Sigfried Bing is credited with providing the name for this art movement (7) 11. High School party by the seaside? (4) 12. A small bear (3) 14. Art Garfunkel's were only for you in 1975 (4) 15. The way out (4) 18. River in South West England (3) 21. Exposed (4) 23. Religious Society of Friends (7) 25. I forget so I must have the answer to this one! (7) 26. Someone who shows the way (5)

27. Tested (5) 28. The weirdest thing! (6) Down 1. Barrel shaped (6) 2. Town in Devon (7) 3. The answer to this could have come from Lear (8) 4. Not quiet (4) 5. 1485-1603 (5) 6. Serious, perhaps sad (6) 7. Salmo trutta (5) 13. Mad, or at least in disorder (8) 16. Specify a list in detail (7) 17. Imagery based on modern popular culture (3,3) 19. Balanced, fair (5) 20. Royal approval (6) 22. Listlessness arising from boredom (5) 24. Soiled, second hand (4)

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Helen Rourke to Appear in "Annie"

By Bev Hollingsworth Many members will already know about Helen Rourke, a very talented singer who has RP. Those of you who have heard her sing won’t be surprised to learn that she is taking to the stage in Birmingham in April for a week, appearing in the musical "Annie". The dates are 15th - 19th April, at The Crescent Theatre, Brindley Place, Birmingham.

The story is set in New York City during the Depression, and is a classic of course. Annie lives in an orphanage run by the bad tempered Miss Hannigan. Like all the children, Annie doesn't like the orphanage and hates Hannigan. Annie is chosen to spend the Christmas holidays with the wealthy Oliver Warbucks. Hannigan is furious that Annie will be spending the holidays in the lap of luxury.

Warbucks is charmed by Annie - enough to offer a fifty thousand dollar reward in the search for her folks. That's when Hannigan's con-artist brother Rooster and his floozy girlfriend Lily come in … …

Bev Hollingsworth from our Midlands Branch is arranging a group booking, but of course you can also contact the box office direct.

Box Office: 0121 643 5858 open 4.30pm - 7.00pm (not Sunday) Bev Hollingsworth: 01926 633412 RAG Blackpool Weekend Friday (April 2008) The 2008 Retinal Awareness Group (RAG) annual weekend for those with RP runs from 11th to 13th April at the Carousel Hotel in Blackpool. The main speaker will be Professor Graham Black from Manchester Eye Hospital. Other sessions will include the charity Sense and soprano Denise Leigh will talk about her life in music.

We will have exclusive use of the hotel. The cost of the weekend is from £110 including most meals.

Further information can be obtained from Mrs Nicole Woodin on 0207 794 9502 or email h.j.Leicester@city.ac.uk.

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RP Fighting Blindness Crossword No 1 1

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WIN a portable DVD player which also plays audio CDs. Clues are on Page 22. Send your complete grid to Members Crossword No. 1, RP Fighting Blindness, P.O. Box 350, Buckingham, MK18 1GZ. Name .................................................................................................

Postcode.............................................. (The closing date is 1st April) National Prize Draw Linda and Colin McArthur write: Tickets will soon be sent for the Annual Prize Draw, last year this made £15,000 and our target this year is £20,000. Please consider asking for more draw tickets if you think you can sell them to friends, colleagues or local groups.

We normally send £10 worth (2 books) unless you have requested otherwise. However, please let us know if you do not wish to receive tickets so that we do not waste the charity's resources.

Please contact us on 01983 406661 or fundraising@brps.org.uk.

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