Look Forward issue 127 - Summer 2008

The Newsletter of the British Retinitis Pigmentosa Society

In Your June (Summer) 2008 Issue No 127

Letter from the Chief Executive ..

Research Update: Gene Therapy Technology News .. .. ..

Members’ Conference and AGM Branch News .. .. ..

Action Hotels (Advertisement) ..

The Eye Fund 1 Year On .. ..

More Branch News .. .. ..

The RP Helpline .. .. ..

Moroccan Adventure .. .. ..

Letters from Wales and Scotland Alexandra Rose Day .. .. ..

Classic Hot Rods .. .. ..

News Shorts .. ..

Collaboration with Foresight Dubai New Projects Approved .. ..

Visual Aid Review .. .. ..

Crossword Clues .. .. ..

Christmas Already! .. .. ..

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Newsletter Editor Christine Medway.

RP Fighting Blindness RP Fighting Blindness (also known as the British Retinitis Pigmentosa Society) is a charity dedicated to stimulating and funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP and their families. RP is the name given to a group of hereditary diseases of the retina that lead to deterioration of vision and often to blindness.

Membership Subscriptions The membership fee is £15 due each January. If you have not paid for 2008 please send a cheque payable to ‘RP Fighting Blindness’ to the address below. Additional donations are 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 the charity each quarter. Cassette tape copies are available on request free of charge. A pdf version can be downloaded from the members’ area of the website at www.brps.org.uk.

Articles for Autumn Edition Please note that articles must be received by the office by 31st July for the September (Autumn) edition. Your items are greatly appreciated but some may have to be held over for a later issue if we are short of space. Every effort is made to ensure the accuracy of all information printed but the charity cannot accept responsibility for errors.

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

Tel: 01280 821334 Charity No. 271729

If you would like your company mentioned 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, What a great quarter to be involved in the search for a cure for RP, with international headline news about major steps forward really placing us in the spotlight and providing renewed hope and optimism for many. Selwyn’s article on page 4 sums up the latest developments in more detail, but I wanted to re-iterate a few points I made in my blog last month that I think are really important for us to bear in mind.

Firstly, this is real progress. Many of our members, volunteers, and the trustees of course, have been working to identify and develop a potential treatment for many years, even decades. Lynda Cantor, our founder and trustee, told the media, “I’ve said many times over the years that if I lived to see the day that one person’s sight was improved as a result of our work I would be happy”.

Secondly, we must ensure realistic expectations. Undoubtedly progress is all scientifically significant, exciting, and gives huge cause for optimism, but we do not want this news to give the impression that a cure is just around the corner. We are only one year into the current three year trial and trials to tackle other suitable gene flaws will have to go through the same hoops and more.

Finally, we want to capitalise on the interest stimulated in our work. We need more funds to drive the gene therapy agenda in the same way we have driven the gene hunting agenda in the past, so we must ensure that individual donors, trusts and companies understand the importance of financing continuation work. We will be launching new fundraising campaigns to exploit increased awareness of the fight against RP. As well as Selwyn’s article, the recent news is all covered on our brand new website (www.brps.org.uk) in some detail, so do take a few minutes to explore the site if you have access to the internet. If not, don’t worry, we will still be keeping you up to date in future quarterly editions of this Newsletter.

Until next time, my thanks again for your support.

David Head MBA, Chief Executive Page 3

Research Update: Gene Therapy Trials

by Selwyn Higgins Only occasionally am I able to use the word ‘breakthrough’. I think that the news that broke on the 27th April is worthy of that description. By now you will all have heard reports of the success regarding at least one patient in the trials started last year on a gene therapy treatment for a rare and severe form of RP called Leber congenital amaurosis.

The trials began early last year at Moorfields Eye Hospital, using a gene therapy treatment developed by Professor Robin Ali.

problem at its source, replacing the genes supplying the wrong instructions to the retina.

So, where are we now?

Well the trials that The surgeon who started last year were carried out the delicate phase 1 trials to correct operations was Mr. James Bainbridge, the RPE65 gene.

Details of these trials using a technique that were printed in the involves minimal retina Prof. Robin Ali Winter ’06 and Winter damage. This brilliant news is just reward for our ’07 issues of Fighting Blindness.

They involve a selected group of members, who have worked so people with Leber congenital hard over the past thirty years amaurosis (LCA) and whose RP raising funds to support our projects, as well as for the many is well advanced. All of these trials require the permission of scientists who have provided the building blocks that made it the regulatory authorities and the purpose of a phase 1 trial is to possible. test a treatment for safety.

It is also a justification of the plan set out by our Medical Advisory However, in the case of this Board and research team many particular group we have a years ago; in brief – first find the bonus; the safety trial is showing genes, then find out what they do, some beneficial results. LCA is a then finally find a means of rare form of RP affecting around producing corrective genetic one in fifty thousand of the material and introducing it into the population but this must not eye. Gene therapy tackles the detract from the significance of Page 4

this breakthrough. It proves, for the first time, that gene therapy is a viable form of treatment for human RP. We anticipate that this success will encourage permission for trials on other forms of RP for which corrective genetic material can be produced. There is also similar encouraging news from Philadelphia in USA where similar trials have been running, though using slightly different surgical techniques.

There is cause for celebration but we have a long way to go. I am in no doubt now that we have chosen the correct way forward but in order to keep this progress moving we must all redouble our efforts on fundraising to speed up

the progress of research. Let’s hear some good ideas from younger members especially; after all, it’s your future!

Earlier in April we also had more news about the development of artificial retinal implants, again from Moorfields. Two patients in their 50’s had the devices implanted on 15th April, and though it will be some weeks before we can report any results, the operations were successful.

Dr. Lyndon Da Cruz was the surgeon who implanted the latest devices, which were developed from earlier prototypes trialed in the United States. These are the first UK trials of such implants and we watch with interest.

Technology News On 27th April we launched our brand new website. This uses new technology, is highly accessible, and contains new and updated information about RP and about current research. We are indebted to Dr. Michel Michaelides who has authored the new medical content and to Jonathan Abro who has overseen the technical developments; the site is now a world-leading resource for all things RP. There is also a ‘members area’ which you can access using the password on the front cover of this Newsletter. Using the ‘contact us’ pages of the site you can also sign up for monthly email news bulletins and volunteering alerts. You can visit the site at www.brps.org.uk.

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Members’ Conference and AGM 2008 Saturday June 14th Our conference coordinator Alan Foster reports on latest event plans including Professor Robin Ali as our keynote speaker We have a great programme and two excellent speakers lined up for the members’ conference this year. So, if you haven’t already done so, please mark the date in your diary, as we would love to welcome record numbers of members at the event. These are exciting times for both the Society and RP Research, please take the opportunity to come and hear the latest news on both!

Venue & Location Friends House is in Euston Road. The House has an interesting history: the home of the Religious Society of Friends (Quakers) since its construction in 1926. It was designed by a young Quaker architect, Hubert Lidbetter, who won a bronze medal from the RIBA for the project, and is now a listed building. For those who want further information about the Quakers, their website is at www.quakers.org.uk.

We have the use of the Large Hall throughout the day and the Euston Room for the morning exhibition. The House is a large and rather complicated building, but we’ll do our best to signpost our rooms and activities. There is a very attractive internal courtyard and external garden area for refreshments and breaks during the day.

The Friends House is located on the South side of Euston Road directly opposite Euston Station and 5 minutes from Euston Square tube station. Several bus routes (10, 18, 30, 73 and 205) pass the door.

Metered parking is possible in the area but is very limited, and disabled facilities are also limited. Please ring 020 7278 4444 for more details.

An NCP car park is close by, underneath the Station.

Morning Exhibition and Talks Several exhibition stands will be set up in the Euston Room and in the corridor outside the Large Hall. The exhibitors include CVIP, Bierley, Action for Blind People, Choice Technology and Training, Sound Foresight and Computer Room Services. Some of these exhibitors will also speak in the Large Hall during the morning. The timings for this Page 6

will appear in the Programme for the day. Mark Pampel will once again be playing the piano during the morning and we invite you to make a donation to the Society in appreciation.

Afternoon Sessions The afternoon will start with the business session at 1.00pm with some additional time set aside for the Chief Executive, David Head, to discuss his role and answer questions. At 2.00pm Peter Atkin of RNIB will demonstrate and update us on some fascinating technical advances for visually impaired people, and how we can reap the benefits of Digital TV and Audio Description services.

After a short break for tea and coffee, the research session, chaired by Professor John Marshall, will feature Professor Robin Ali as our keynote speaker. Professor Ali’s recent work on Gene Therapy is headline news in the RP world and we are privileged to have him speak at the conference and answer your questions.

The event will finish with the Annual Prize Draw so do stay to see which of the many great prizes you may have won. The event closes at 5pm.

Catering Tea, coffee and cold drinks will be available throughout the morning and at the midafternoon break. For lunch, the Friends House has an attractive cafeteria and, for those who want to stretch their legs, there are pubs, restaurants and sandwich bars in the area. If you Friends Meeting House is directly bring lunch, you can find a opposite Euston Station spot in the internal courtyard or garden area, and please note that alcohol is not allowed anywhere on the premises.

Finally, it would be helpful to us if you could drop a quick email or phone call to the office to let us know that you will be attending, as this assists with the planning for the event.

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News … Branch News … Branch News…

News and Views from the Branches From our volunteers across the UK CROYDON Joan Raccagna

DEVON & CORNWALL Julie Allen

Thanks to those who attended on 23rd February to welcome David Head. It was a good meeting as many exciting things were discussed. Our collection at the Fairfield Halls on 5th April (it was bitterly cold that day!) raised £119.25. Our next collection will be on Friday 18th April and we also need support for Saturday 27th Sept at Asda in Croydon.

For those readers who use The Hearing & Sight Centre in Plymouth you may or may not know that it has moved. It can now be found at Ernest English House in Buckwell Street, PL1 2DA. Tel: 01752 201766.

Unfortunately the date offered by Asda coincides with our AGM at the CVAB. So if you are not planning to attend the AGM but would like to help us please let me know on 0208 660 8164.

Our Guest Speaker at the AGM will be Dr Kevin Gregory-Evans from Imperial College, a reader in molecular ophthalmology. It will be held in our usual place at Bedford Hall, 72-74 Wellesley Road, Croydon.

Don’t forget you can bring foil, used stamps, old mobile phones and foreign coins to the meeting for recycling into cash for the Research Fund.

I know it’s early to be thinking about Christmas, but taking all the feedback into consideration about last year’s Christmas Dinner, this year’s will again be held on a Saturday in early December, so please pencil these into your diaries. Concrete details for your diaries will follow.

If anyone is interested in going to ‘Sight Village’ on 14th/15th/16th July please let me know (joolsallen@hotmail.com) as it may be possible to arrange a Cornwall & Devon Branch visit. ~~~ ~~~ ~~~ DORSET BRANCH Hazel Jeffery As I write this we are days away from our AGM, and by the time you read it our new committee will be in place for the coming Page 8

year. Thank you so very much to Jean Bradshaw, Andrew Bradshaw, Angela Oxford and Margaret Worthington, the 4 retiring members of the last committee who between them have clocked up an incredible 52 years service to the Society!

Our Branch wouldn’t be what it is today without their tireless work, they will be a hard act to follow.

A heartfelt thank you to them all.

We are now headlong into our fundraising season and a number of collections have been organised. As ever, we would appreciate more help with collections and just one hour of your time can make such a difference. Please ring Toby Hart on 01202 744344 (Poole area) or Janet Keen on 01300 348851 (West Dorset) to volunteer your services.

Janet and Graham Keen are organising a Garden Fete on Saturday, 12th July so please make a note in your diary to come along and support the event. There will be cream teas, stalls selling home made cakes and preserves, plants, books, and gifts, a raffle and tombola, all in their lovely country garden. What a perfect way to spend a summer’s afternoon!

ESSEX & SUFFOLK Steve Carrington Hi again everyone. Things have been a little quiet at the start of the year fundraising wise but we are now getting back into top gear.

Shani & Nick Carey from Maldon were in receipt of over £1,000 raised at a local St George’s Day celebration on 19th April. The event was sponsored by Global Estates UK again. A big thank you to all who worked so hard to make it a success and well done to Shani for selling so many raffle tickets (and getting additional donations too).

Speaking of fundraising events, 2008’s Stride for Sight sponsored walk will be on the 3rd August at 9.00am. We will walk from Shoebury’s Shorehouse to the Sold Ship in Leigh as before.

Food is laid on along with drinks available as usual so come along and raise some money. Sponsor forms and info are available from Margaret on 01268 777436.

Lastly, the Essex & Suffolk annual branch gathering is going to be in Chelmsford on 21st September. Please watch out for details in the local branch newsletter soon.

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Call one of the hotels now to take advantage of these special offers.

Cliffden Hotel, Teignmouth, South Devon, 01626 770052 Stay a week or more during the school summer holiday and get a free family day out at a great local attraction. Offer includes entrance tickets and transport for all your party. Book by the end of June and get 10% off our normal tariff rate.

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Lauriston Hotel, Weston-super-Mare Stay during July, August or September and pay only £199 per person for a four night break including Dinner, Bed & Breakfast. To book call 0845 6030051 and quote NL1.

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The Eye Fund 1 Year On

by Helen Rowlands The Eye Fund provides counselling for people losing their sight. Helen updates us on progress since launch, which was reported here last year.

Some time ago I wrote to tell you about The Eye Fund and I’m sure from my article you can tell we had really mixed emotions. We wanted to make a difference but were worried that we might have taken on more than we could tackle as we pressed ahead with the project in memory of my brother Simon.

In the weeks following the original article we were amazed at the response from so many people; most share our concerns at the lack of counselling for people losing their vision.

Since then we have been really busy and are amazed at how much we have achieved in such a short time. We had a very successful launch event at Hope Park Community Nursery and an equally successful exhibition of Simon’s work at the Quayside Gallery in Sudbury. We are now able to provide a Counsellor for a year and are enormously pleased with ourselves.

But this is still just the beginning, working closely with Liverpool

Hope University we are about to launch The Eye Fund Research Project.

The project will look into how best to support people who are coming to terms with the deterioration of their vision and of course to do this they need your input. They are very interested in the experiences of those who are affected and would love to hear from you if you think you can help.

If would like to find out more about participating in the project then please contact me at helenmrowlands@googlemail.com

or you can write to Carol Sherry at 6 Patton Street, Birkenhead, Wirral, CH41 8DN.

It would be helpful if any member who is attending the Retina International Congress in Helsinki at the beginning of July could let us know, as we would like to try and arrange a meeting of ‘brits’ at some point during the event. See www.retina.fi/congress for details.

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More Branch News … More Branch News News and Views from the Branches From our volunteers across the UK COVENTRY & DISTRICT Richard Bartlam In 2007 we were very pleased to send £11,300 to the Research Fund and 2008 has got off to a rip-roaring start too with various fundraising events enabling us to send a further £3,200 already.

Our fundraisers deserve a big thank you. Our dedicated branch members along with Don & Pat Stanley and Julie & Paul Norman do an excellent job shaking tins at our local supermarkets, nearly always crossing the £1,000 mark these days.

Leigh and Mark Kelly undertook a sponsored walk doing 18 laps of Coventry City football pitch; Tina White along with her friends Chris, Mick and Gilly did the Santa sleigh ride on a cold night in December in Wellesbourne to raise funds for us; Tina's son, Ade and his partner George, who live in Bury St Edmunds, kept spreading the word and raising funds all around Suffolk by holding music festivals and various other events at the Barn.

Congratulations to you both as well on your civil ceremony,

where guests donated £1,760 instead of buying presents. Glynis Voss did a sky dive along with her son Steve. Both live in Leicester, where the Belmont House Hotel hosted a millionaires' banquet which along with the sky dive raised £2,421.

We thank you all from the bottom of our hearts for the tremendous amounts each of you has raised.

Sadly we had to announce the death of Gwen Baxter, my mumin-law and a member of the branch since its start in 1979, only missing a handful of branch meetings. She is remembered by past and present members, and Research Fund donations in her memory have totalled £485.

Our AGM in February saw no change in officers and committee, with Leigh Kelly still at the helm as our chairperson after a very successful first year.

In April we welcomed CEO David Head to the branch. His enthusiasm and his down to earth approach inspired everyone in the room and we wish him every success for all his plans for RP in the future.

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HAMPSHIRE BRANCH Steve Harris Our 2008 street collection season is now underway. This year we are focusing on supermarkets and have collections arranged at Sainsbury's in Winchester on 7th June, Waitrose Lymington on 12th July, Waitrose Newbury on 26th July, Waitrose Chandlers Ford on 2nd August and Sainsbury's and M&S superstores at Hedge End on 16th August.

We are always hopeful of seeing new people help us shake the cans so if you would be willing to come along to any of these collections then please phone Michael on 023 8073 2141.

Unfortunately the telephone number printed in the Spring newsletter was incorrect so please update it with this one, apologies for the error.

Our AGM will take place this year at Holy Trinity Church in Winchester on Saturday 13th September. Please do make a note to come along to this meeting, as we are looking forward to welcoming Professor Shomi Bhattacharya as our main speaker, who will bring us all up to date with the latest research.

We still need a volunteer to join the Hampshire committee, so if you would like to know more

about this, or about our meeting in September, please phone me on 023 8047 6894.

THE RP HELPLINE Carole Holmes The helpline is open every weekday 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 Thank you to all the members who have expressed an interest in getting involved with the Helpline Service. I now have enough new volunteers for the next training weekend.

I apologise if you volunteered and I have not contacted you. Could you email me or telephone me if you are still interested in helping.

Carole Holmes Helpline Coordinator 01253 404194 carolejholmes@googlemail.com Remember you can sign up for all email volunteer alerts through the contact page at www.brps.org.uk Page 13

Desert Trek March 2009 We Need your Help!

By David Head As we announced in the spring newsletter, we are organising our very first ‘charity challenge’ abroad, a trek in Morocco next March.

We are planning to take 30 people or more trekking in the Sahara Desert – an adventure of a lifetime for the people that take part and a fantastic way to raise money for our research work.

Morocco is exciting and unspoiled and we will be trekking across the desert with local guides, well away from the regular tourist trails and towns. This is a unique opportunity to take part in a very special event.

Plans for the trip are all now in place and can be obtained either from our website or by telephoning the office and asking for the information pack to be posted to you.

All of our members can help us now in several ways.

Firstly, the trip is accessible to people with visual impairments, so please consider signing up.

Secondly, please spread the word about this adventure. Let friends and family know, tell colleagues at work, put it in local newsletters and papers, and make as many links as you can to www.trektofightblindness.org.uk.

Of course, the other way to help is by supporting anyone in your branch that signs up for the trip. They’ll need your help with the fundraising and lots of encouragement.

www.trektofightblindness.org.uk Page 14

ews … Wales News … Scotland News…

Letters from Wales and Scotland

by Marian Evans and Jim McLean On the 23rd February a very enjoyable (and profitable) coffee morning was held in Carmarthen when over £900 was taken, including donations. I'd like to thank all the ladies who helped make it a special occasion, whether it was keeping up a steady stream of teas and coffees or helping out on the stalls. All had a very good time. Many thanks for everyone's support.

Our next meeting, which will include lunch, is on 22nd June at 1pm at The Fishguard Bay Hotel near the ferry port in Fishguard. This will be a first for us in Pembrokeshire and we hope that those of you who have been unable to attend previous meetings will come along and join us.

Anyone interested in attending please ring Audrey on 01348 872039.

Marian ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ Well, our first meeting of the year in March and election time with the troops again missing out on the chance to get rid of me…I’ve been re-elected!! Well, I never.

Very much to my liking, Rosemary Honeyman, treasurer, and Aileen Playfair, secretary, were re-elected too. (perhaps to keep me in check methinks.) It was also brill to see new members again attending to supplement the diehards.

We managed last year to send over £3,400 to HQ and this year we hope we can top that. Moves are afoot so to do with members already starting, and another lass perhaps organising, a ceilidh. (Maybe get me

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kilt looked out for that, you know, the only thing wrong with wearing the kilt is sitting on the ***** pleats … murder!)

Taking the chance here to talk to all our members, at our meeting, we talked about the various travel pass schemes operating north of the border. ‘Tis a bit of a minefield, just what can the companion travelling with the blind pass holder, who travels free, expect to pay and with what bus or train or indeed ferry company? With Lynn Barr’s, from the West of Scotland branch, help we answered many questions. Get in touch with me if you wanna find out more.

Again on the blind pass merits, I was over on Arran on 15th April, travelling on the train from Larbert to Glasgow to Adrossan and on the ferry to Brodick, round the island on the buses, and back home and all for nowt. It was beautiful. Alright, I do have 30% central vision left so I’m not too bad and I would encourage all to go for it. If anyone wants more info on how I do this get in touch.

Jim Alexandra Rose Day 21st June from the Head Office Team Many of you will have already heard of the Alexandra Rose Day (ARD).

Each year the charity organises collections in various towns around the country with the intention of benefiting local charities and community groups. ARD was founded in 1912 when Queen Alexandra started the first national Flag Day to mark the fiftieth anniversary of her arrival in the UK from Denmark. Thousands of volunteers sold roses in London for the benefit of hospitals and other charitable institutions. The first Rose Day raised £32,000 - equivalent to over £2 million today!

This year Buckingham is one of the towns to benefit, and we have been chosen as the town’s ARD partner. We will be providing volunteers to help with the collection and we will retain 90% of the money raised.

Being linked to this national event is good news for the Society and for our members, especially as our MP John Bercow has agreed to come and collect for us which will give us extra publicity.

Members within striking distance of Buckingham can volunteer to help on 21st June by calling the office.

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Classic Hot Rods Sponsor RP Fighting Blindness

A perk of volunteering is free entry into the race meet for the whole session, not just the Classics, so if you are a motor racing fan, please let us know.

Race meetings also include Legends, Bangers, National Hotrods, and lots more. In some cases we can arrange pit visits and close up views of the action (depending on the venue).

In March we had confirmation that the drivers on the UK Classic Hot Rod racing circuit have chosen RP Fighting Blindness as their sponsored charity for 2008.

This is great news, great fun, and will raise several thousand pounds during the season.

This is thanks in no small part to our member Matthew Spellar, who has RP. His connections with the Classic Hot Rod Community are what led to the arrangement and we are grateful to him for this.

This first meeting was unfortunately very cold and wet, but we turned out a team of fundraisers from Midlands Branch. David our CEO went along himself to the second, rather warmer, meeting and sold raffle tickets, and we will be looking for volunteers on the run up to each of the rest of the meetings during the season.

Our logo is on every car Remaining dates and venues 14th June Hednesford (STC) 15th June Northampton 29th June Bovingdon 3rd August Hednesford 17th August Buxton 24th August Wimbledon 7th September Aldershot 27th September Birmingham Remember you can sign up for volunteering alerts by email at the ’contact us’ pages of our new website. See www.brps.org.uk

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News Shorts!

Four meetings each year are held in London with expenses paid.

Nominations

Foreign Coins

Nominations are invited for the four elected posts on the Management Committee which will be voted at the AGM in June.

Head Office will collect all foreign coins if you are able to get them to us cost effectively through meetings and mutual contacts. By collecting in bulk we will be able to exchange the coins for £Sterling for the Research Fund from time to time.

These are Branch Liaison, PR Manager, Retina International Representative and Information & Support Officer. This latter post updates the previous Welfare Manager role to reflect the importance of the Helpline and other information services to members and others with RP. To nominate someone, or even yourself, please contact Kate at the Buckingham office for forms.

Newsletter Editor Our Newsletter Editor Christine Medway will be stepping down in June to allow her to work more with the Helpline team.

Consequently an opportunity exists for a volunteer to join the Management Committee as Editor. If you think you might like to take this on, please email David at david@brps.org.uk.

The Newsletter Editor needs to work with contributors and liaise with our printers and distributors.

The Charity Lottery The TLC Lottery is a chance to win £1,000 each week whilst contributing to the Research Fund.

You can enter from as little as £1 per week by either contacting Bev Hollingsworth on 01926 633412 or by entering online at www.tlclottery.co.uk Personal Donations As ever we are always looking for ways to raise money and so we make no apology for asking you to consider further donations to the Research Fund. You can do this online at www. brps.org.uk or by simply sending a cheque to the office.

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Collaboration with Foresight Dubai Co-funding our Research Projects

By Stephen Jones Many of you will know of or may have met RP Fighting Blindness member Katy Newitt. Katy has lived in Dubai for a number of years and is the founder of an organisation named Foresight, which operates in Dubai and other parts of the United Arab Emirates.

With the help of a small staff team and an army of volunteers, Katy has built up Foresight into a well respected patients’ organisation with a very strong emphasis on fundraising.

Take a look at the Foresight website www.foresightrp.com and you will get an idea about their impressive range of fundraising activities, resulting in an even more impressive income stream.

Towards the end of 2006 Foresight approached the Society with an offer to jointly fund one of our research projects. Discussions took place which resulted in an agreement to co-fund a project run by Prof Shomi Bhattacharya at the Institute of Ophthalmology. This arrangement has worked well and in early 2008 a further agreement was finalised to co-fund our support for Prof Robin Ali’s work.

Katy Newitt and supporters at a fundraising event in Dubai, April ’08.

To date, Foresight has contributed over £80,000 to these projects with a similar amount promised for the future. In other words they are making an enormous contribution to the RP research effort and we congratulate them for their great success in building such an effective and exciting organisation in such a short time.

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New Projects Approved News from the Trustees At the trustees’ meeting at the end of April grant applications were approved for two exciting new projects, and to purchase research equipment.

On the recommendation of the Medical Advisory Board (as is always the case) further support was approved for Professor Bhattacharya’s work.

His new project will be studying molecular pathology and disease progression and aims to lay the groundwork for potential future gene based therapies.

Funds were also approved for a 3 year project to identify and characterise a new X-linked RP gene. This will be headed up by Dr Hardcastle at the Institute of Ophthalmology in London.

for Professor Andrew Lotery at the University of Southampton.

The Rotor-gene 6000 amplifies small samples of DNA provided by patients and “melts” it at high temperature. Mutations are detected as a difference in the melting temperature of the sample. The equipment will allow researchers to quickly and accurately mutation scan DNA samples from RP patients and give a molecular diagnosis.

The funds for this particular grant were raised by the See Round Britain team; members will recall they sailed around our coast in July last year, starting and finishing in Southampton. “ … the Rotor-gene 6000 processes DNA samples very quickly …”

Finally, a grant of £20,000 for new equipment was approved © Metro (permission granted)

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The Bierley Monomouse

By Lawson Eades Lawson Eades from Scotland uses the Monomouse regularly. Here she tells us about her experiences. You can win a Monomouse worth £89, donated by Bierley, in our competition on page 24.

I first heard of Monomouse when I wanted a magnification tool that I could use at home, having used similar equipment at work, so I was considering purchasing anyway when my Rehab. Officer provided me with one on a permanent loan.

It looks just like the mouse you would use on your PC and was very easy to set up, all that is required is a mains socket and a Scart socket on your TV set.

I’ve now had my Monomouse for 18 months and it sits quietly at the side of my TV plugged in and ready to use. All I have to do is press the button on the top of the device. The TV switches to the Monomouse as soon as it is turned on and returns to the normal picture when it is switched off. The TV that I use has a large (28 inch) screen and I sit 4 to 5 feet away; there is plenty of cable from the Monomouse to reach my armchair and scan the item I want to read. I have used the equipment to view items such as newspaper articles, tinned

food, medication labels, recipes and knitting patterns; even to look at jewellery and a cut on my finger!

The image on screen is very clear as long as you hold the device against the item. With very glossy items reflection reduces clarity slightly, but it is still clear enough to read. A minor limitation is that I can only view small areas at a time. This is difficult when viewing a large photograph for example, but it is good to be able to see detail that would be difficult to view with a conventional magnifier.

When reading text, it is a simple process of moving the device across a line of text and down to pick up the next.

To summarise, I would say that the Monomouse is an excellent tool at a reasonable price.

Just don’t drop Monomouse on the carpet whilst it is switched on as it too easily shows up guide dog hairs!

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Crossword Clues See page 24 Across

Down

1. A football team (6) 4. Spanish coast (5) 8. Salt water (5) 9. Gunman needs her lost sort (7) 10. Rain or shine (7) 11. Some really cold 10 (4) 12. Large beer or wine cask (3) 14. Tibia (4) 15. Sound like a pig (4) 18. Prefix for threefold (3) 21. Reverse an action (4) 23. Talk and talk and talk (7) 25. Colour matching system (7) 26. A marbled cat? (5) 27. Actor Flynn (5) 28. Extortionate lender (6)

1. Corners of the arms (6) 2. Last words (7) 3. Loxodonta africana for example (8) 4. Reduce numbers (4) 5. Smooth and glossy (5) 6. Cupids go to the heart (6) 7. 4’3’’ in high heels (5) 13. Currently (8) 16. One who eats only little but does so often (7) 17. A colour without rhyme (6) 19. Norwegian dramatist (5) 20. Call to your god (6) 22. One who gives (5) 24. Young equus caballus (4)

Previous Winner The winner of RP Fighting Blindness Crossword No 1 was Riita Rasanan from Carmarthen in Wales who received a portable DVD/CD player. Well done to Riita and thank you to the dozens of you that entered.

Prizes Our crossword prize this quarter has been donated by Bierley, makers of visual aids. Please let us know if you or your company can donate a prize for the Autumn edition of the Newsletter. You can contact us at the Buckingham office by telephone on 01280 821334 or email at info@brps.org.uk.

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Spread the Word and Help Raise Funds

By Gill Eastwood Stickers have been produced to attach to your Birthday cards, or thinking ahead, for your Christmas cards. They are a far more effective way of making a donation than buying charity cards from the big retailers, where sometimes very little of the price actually reaches the named charity itself.

The stickers are available at a cost of £5 for a set of 100, or £3 for a set of 50, and each one helps the Research Fund by a few pence.

Why not order a batch now? Send the form below to the office or contact me (Gill Eastwood) on 01923 773073 or gilly5@tesco.net to order in plenty of time for Christmas.

Send this page to RP Fighting Blindness, P.O. Box 350, Buckingham, MK18 1GZ. You can enter the crossword overleaf at the same time if you wish.

Name .................................................................................................

Postcode.........................................Tel No …………………………….

Please send me ……………….….. Birthday/Christmas card stickers Cash/cheq is enclosed for £ ……..… paid to ‘RP Fighting Blindness’ Page 23

RP Fighting Blindness Crossword No 2 1

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WIN a Bierley Monomouse worth £89 (see page 22 and 23) which transfers and magnifies text to your TV screen.

Clues are on Page 22 and the closing date is 1st July Send your completed grid to Members Crossword No. 2, RP Fighting Blindness, P.O. Box 350, Buckingham, MK18 1GZ. You can order Christmas card stickers overleaf at the same time if you wish.

Name .................................................................................................

Postcode....................................Telephone …………..……………….

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