Look Forward issue 134 - Spring 2010

The British Retinitis Pigmentosa Society

Spring Newsletter 2010: Issue 134

Inside! ● Members’ Conference & AGM 2010 ● Outreach and befriending services ● Tax matters – maximising your donation ● Fundraising news from our members: treks, walks, races... ● News from 8 branches up and down the country ● £1/3 million approved for three new RP research projects ● An MBE for Mary Guest Keep helping! Renew your Membership now for 2010!

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Table of Contents Letter from the Chief Executive Members’ Conference & AGM 2010 Update on our Outreach Project New Befriending Service – Volunteers Needed!

Tax efficiency: Give Your Money to RP Not the Tax Man Calendar Dates Three New RP Research Grants Approved RP Heroes Fundraising The New John George Award Thanks for the Memories: MBE February 2010 Branch News Crossword Puzzle No. 8 Crossword Solution No. 7 (Winter 2009) M E L O N S O I O S S U M P S L C I T O O N T A R I O W E I P I D O L B S A M A C H E A R A R N G L I D I N G E K N Y S T U N G 2

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

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Letter from the Chief Executive Dear Members Welcome to our Spring 2010 issue.

With the New Year came new research projects and new fundraising ventures, many of which are featured in this magazine. We’ve also included plenty of insight from our branches around the country, several articles, and information about the June RP Members’ Conference which this year returns to Euston, London.

The new research project grants feature on the research pages, so I won’t go into any detail here, just to say how pleasing it is that we have been able to maintain investment in research over the last year. After all, we’ve been working in tough financial times as everybody knows. As a result of the recession we are rescheduling our 5 year plan for growth to commence on 1st July this year but, in the meantime, I think that members and trustees should take a degree of pride in the fact that the charity has just had its best two years ever for nonlegacy income. We are still in the process of finalising and auditing

the 2009 accounts but will be able to report to you in detail well before the conference.

In this issue Sue Drew has also written about our Outreach Project which has had a great impact, especially in London and Birmingham where she has been focusing her efforts on reaching BME communities. In particular we are making more links with Asian families where we know that incidence of RP can be high.

Those of you who made January resolutions to do good, get fit, be active, or travel should all be interested in our challenges this year – please do consider signing up for our adventure project building a school playground in Namibia, Africa. A bit closer to home, we have places in several major runs available to members.

Call us to learn more.

As ever, my thanks to you all for your continuing support – and if you haven’t done so yet, please renew your subscription for 2010, we need you on board!

David Head MBA Chief Executive 3

Members’ Conference & AGM Saturday 19th June 2010 in London (Euston) Our Conference Coordinator Alan Foster reports on the event plans Once again, we have a great programme and some excellent medical speakers lined up for the Members’ Conference this year. Please mark the date in your diary. We would love to welcome record numbers of members! These are exciting times for our research; research so do come and hear the latest news, meet members, and chat with RP medical experts.

Venue & Location Friends House is the home of the Religious Society of Friends (Quakers). It is very accessible, located on Euston Road directly opposite the station and just 5 minutes walk from Euston Square tube. Bus routes 10, 18, 30, 73 and 205 pass the door.

We will have plenty of space, including for exhibition stands. There is an attractive internal courtyard and external garden area for refreshments and breaks during the day.

Metered parking is possible nearby but limited, as are disabled facilities (NCP parking under the Station). Please ring 020 7278 4444 for details.

Morning Exhibition and Talks The event opens at 10.00am. Exhibition stands will be set up in the Euston Room and the corridor outside the Large Hall. The exhibitors ex include several companies delivering products and services for VIPs. Some of them may also speak in the morning session (timings will be 4

confirmed in the programme). You will have the opportunity to talk to staff, trustees and medical advisers informally throughout the morning.

Afternoon Sessions The afternoon will start with the short business session at 12.45pm and there will be a Q&A with the Chief Executive, David Head, and the Trustees. Our Information & Support team will then introduce a session before the tea and coffee break.

The medical research session, chaired by Professor John Marshall, will feature two keynote speakers (to be announced soon). There will then be an open question opportunity. We will finish at 5.10pm after our Annual Prize Draw (with lots of great prizes!)

Catering Free tea and coffee will be available. For lunch, the Friends House has an attractive cafeteria. There are also pubs, restaurants and sandwich bars in the area. If you bring lunch, you can find a spot in the internal courtyard and garden area (note no alcohol allowed anywhere though).

Update on the Outreach Project!

Just over half-way through her initial one year contract Sue Drew, our Outreach Officer, reports on how the project is progressing.

Last year our Fundraising Manager, Sally Smith, secured funding from the John Ellerman Foundation to launch an Outreach project in June.

It provided for a much needed full-time resource for our vital Information and Support Services.

The aim is to reach out to people we have been unable to connect with previously. These include the newly diagnosed and their families, the Black and Minority Ethnic (BME) communities, particularly the Pakistani community where the prevalence of RP is higher than in the wider UK 5

population, and other groups including the young, the elderly and those living where eye clinics and support services are either distant or absent.

The importance of fundraising for vital medical research is clear. Our support services are equally important to help people live with the everyday issues surrounding RP. In particular, the newly diagnosed and their families need access to the best information and support possible.

I feel very privileged to be involved in this project and the important work of RP Fighting Blindness at such an exciting time, and I am passionate about providing the best possible information and support services we can to those affected by RP and its associated syndromes, I have been working hard to engage with other agencies and eye care professionals recently to find out exactly how we can improve the services we offer as a pro-patient organisation. I am also working with various organisations to ensure RP Fighting Blindness is represented and that RP sufferers obtain up-to-date literature and contact details.

I am pleased to say that I have made very good links with individual Eye Clinics, Primary Care Trusts and other visually impaired (VI) organisations which will help develop continuing good working partnerships and joint projects.

As an example of the diversity of opportunities we receive, last summer I went to South Wales to deliver a training session to health care professionals, which included social workers, rehabilitation officers, and nurses working with people affected by RP. The information I provided was extremely well received and the training deemed well overdue!

In December 2009 we held an awareness event at the London Muslim Centre in East London. It was a resounding success. We had excellent media coverage from the local Asian TV station and newspaper. As a result we have now established a strong relationship with the London Muslim Centre and the Royal London Hospital and have received a significant number of RP patient referrals. We can thus provide important information and support to those affected.

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The next UK awareness event will take place in Birmingham on the 25th March (details on the website very soon). Please feel free to call me at the office or email me at sue@brps.org.uk. I’d love to hear from you!

New Befriending Service – Volunteers Needed!

Beyond our helpline and branch network, we have a new support service. Our befriending service will provide vital support to those living in isolated areas and where transport and other reasons prevent people attending branch meetings. We hope the befriending service will also benefit young people, traditionally difficult for us to reach.

The project is currently at an early stage, but if we are successful in recruiting volunteers, the service will be up and running very soon. To begin with, we will concentrate on fairly large regions of the UK, but this will change as the service grows. We already have volunteers for the North West, Cumbria, Dorset, Surrey and London. We are now seeking volunteers in Scotland, Ireland, North Wales, South, North, East and West of England.

What’s involved?

Each “Befriender” will be provided with details of people in their region who have requested regular “one to one” contact either by telephone and/or email, and have agreed that we pass their details on to one of our “Befrienders”. The volunteer should be happy to contact everyone on their list at least once a month.

Becoming a Befriender Each new volunteer would have an interview over the telephone with someone from our welfare team. This is the same procedure we use for new helpliners. This would then be followed by a training session. There will also be a support system in place for the Befrienders and an informal system of monitoring. If you are interested in being part of this exciting new project, please contact Sue Drew on 01280 821334 or email sue@brps.org.uk.

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Tax efficiency – Give Your Money to RP Not to the Tax Man! We all like to receive a rebate from HMRC when it drops through the door. However there are several ways in which you can stop some of your hard earned cash going to Mr Darling’s office and have it directed to important RP research instead. Sally describes some of the ways to make your giving tax efficient.

Gift Aid If you are a UK taxpayer, you may qualify for Gift Aid, which adds 28% to the value of your donation at no extra cost to you. Thus a £100 Gift Aid donation is effectively worth £128 to the charity. In addition, if you are a higher rate taxpayer, you can claim personal tax relief on the difference between the higher and basic rate of tax in your Self-Assessment Return – worth 25 pence for every pound donated.

Gift Aid can apply to donations made by cash, cheque, direct debit, standing order, debit or credit card, or even donations made with foreign currency (including Euros).

For us to reclaim the tax you have paid on your donation(s), you must have paid an amount of UK Income Tax and/or Capital Gains Tax for that tax year (6 April one year to 5 April the next) at least equal to the amount of tax that we will reclaim on your donation (currently 25p for every £1).

Self assessment tax return A recently introduced method of giving is to donate through your tax return. If you fill in an annual Self-Assessment Tax Return, it is now possible to give to charity some or all of any tax refund that you may be due, simply by ticking the appropriate box on the form. To make a gift to us tick the box and quote our registered charity number 271729.

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Giving shares Giving shares is a simple and tax-efficient way of making a donation. Tax relief is available to UK taxpayers donating shares and securities listed on the UK Stock Market, the Alternative Investment Market and recognised stock exchanges overseas. Tax relief awarded is equal to the market value of the shares on the day the gift is made, plus any associated costs such as the broker’s fees. In addition, Capital Gains Tax that you may have incurred on any increase in the value of the shares since you bought them will not apply.

Example – Gift of shares worth £1,000 Value of shares donated: £1,000 Broker’s fees: £50 Amount available to deduct from income: £1,050 Income tax relief for higher rate taxpayer: £420 Cost of gift to a donor paying higher rate tax: £630 Payroll Giving Payroll giving is available through your UK employer, and enables you to make a charitable donation straight from your gross salary. You get immediate tax relief on the value of your donation. A monthly gift of £20 will cost a basic rate taxpayer just £15.60 from their net pay.

Anyone paid through Pay As You Earn can use payroll giving to donate to the charity. However, your employer must have a payroll giving scheme in place in order for you to make a donation in this way (they may refer to the scheme using a specific payroll agency brand name, such as ‘Give As You Earn’). If it does, your employer will arrange for your payroll administrator to transfer the gift to us from your gross pay.

For further information on setting up a payroll giving scheme in your company please visit the Give As You Earn website.

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For further information on making a tax efficient donation or leaving a legacy to the charity, contact Sally Smith on 01280 821334 or sally@brps.org.uk

Thank You!

By Kate Samwell Pink? Yellow? What about green this year? The major decision about what colour to have the subscription renewal forms. This might seem trivial to you, but, believe me, when you receive over two thousand forms through the post, the colour is quite important!

When the forms start to arrive, it is all hands to the pump. Opening, sorting, checking, stapling – then over to the database for all the information to be entered.

We love this time of year (yes, really), it is always rewarding to receive all the little details and comments that people put either on or with the forms. This is one of the times that we feel closer to our members. We often recognise the writing on a particular envelope and guess the name of the sender.

Many members take this opportunity to send an additional donation towards the work we are doing - whether in lieu of Christmas cards or just as an extra Christmas donation. It would be impossible (and not cost-effective) for us to send an acknowledgement to everyone, but please understand that every single donation is truly valued. The generosity of our members, particularly at this time of year, is extremely humbling to those at the Buckingham office. Please accept our sincere thanks for every single extra penny given – it will be put to good use.

The same thank you message goes of course to the increasing number of our members who pay electronically!

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Please see the back page if you STILL need to renew your membership for 2010

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The first correct entry out of the hat for our Winter crossword competition prize (a £20 Waitrose Voucher) was Colin Mcarthur. Unfortunately, being a Trustee of the charity, Colin had to decline the voucher (Sorry Colin) and the winner redrawn. Congratulations to Peter Booth of Princes Risborough who gets to spend Colin’s prize.

calendar dates calendar dates calendar d 16th Retina International World Congress, Stresa, Italy, 2010 “Changing Our Vision – Bridging the Gap from the Lab to the Patients” The Retina International biennial congress is the major international forum for people with RP to meet researchers from around the world. You are invited to take part. Member Beryl Duggan is also arranging a holiday in Italy including this event.

The 16th RI World Congress will take place at Stresa amidst the beautiful scenery around Lake Maggiore, to the north-west of Milan. The hosts of the event are Retina Italia. The public sessions of the congress will take place over the weekend of Saturday 26th and Sunday 27th June 2010.

Preliminary programme details are now posted on the Retina Italia website www.retinaitalia.org where it is possible to register for the event and accommodation.

Speakers include Professor Robin Ali amongst many eminent scientists working on retinal dystrophies, including RP.

We hope that many members of RP Fighting Blindness will make the trip to Stresa and we know that members who have attended previous Retina International conferences have found the experience very worthwhile.

Members can make their own arrangements to travel to Stresa or they may be interested in the coach holiday option below.

Italy holiday incorporating RI World Congress Note that all arrangements and costs are subject to confirmation.

Travel is by Executive coach with

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air conditioning, toilets, and hot and cold drink facilities. ● Tues 22nd June Depart Chester, picking up in Manchester, Birmingham (other pick-ups can be arranged).

Eurotunnel crossing and overnight stay in France with dinner, bed and breakfast. ● Wed 23rd June Travel through Switzerland to Italy and Lake Maggiore. 4 Star Hotel Milan Speranza au Lac in Stresa.

Excursions to places of interest will be available.

Singing Weekend 2009 & 2010

By Diana Hellbusch Most of us arrived at the Lauriston Hotel in Weston, on the Thursday.

We were given a warm welcome by the staff and it was great to see friends from last year, especially to meet our lovely choir mistress Christine again, just arrived from Switzerland with husband Larry.

Now we could begin!

●Sat 26th & Sun 27th June Retina International Congress.

We duly met at 10 o´clock on Friday morning, about 18 of us, and we were seated in a large semi-circle in the hotel lounge.

Can you imagine being asked how you are feeling, and having to give your answer in song?

●Tues 29th June Start homeward journey.

Overnight stay in France with dinner, bed and breakfast

We worked hard at our music, learning songs from Croatia and Israel, Georgia and Elizabethan England - definitely a challenge, but also tremendous fun.

●Wednesday 30th June Arrival in UK Cost per person £635 (twin/double) £725 (single) Contact Beryl (asap please!) on 01244 680463 or jamesduggan@talktalk.net.

Beryl needs 30 people before this trip can be confirmed. ___________________________ 12

By Sunday evening, we were ready for our concert! The other hotel guests were invited, and we all gathered in the bar/lounge after dinner. We sang our newly learned repertoire with gusto, and were rewarded with applause and much praise! The young musician employed by the hotel to entertain us that evening, listened to our contribution, full of praise. (Should we, too, turn professional?).

●16-18 April Retinal Awareness Annual Weekend, Blackpool. Call Nicole on 0207 794 9502 or email Howard at h.j.leicester@city.ac.uk ●25 April London Marathon www.london-marathon.co.uk or www.runtofightblindness.org.uk ●11 & 12 May QAC Sight Village 2010, Cork. Tel: 0121 428 5041. www.qac.ac.uk/sightvillage If you want to find out how a group of blind and partiallysighted people can learn interesting music at a Singing Weekend, join us next summer at Teignmouth in Devon at the Cliffden Hotel from 29 July to 2 August 2010. The hotel telephone number is 01626 770052.

RP Events 2010 ●2 & 3 March Queen Alexandra College Sight Village 2010, Edinburgh. Tel: 0121 428 5041. www.qac.ac.uk/sightvillage ●14 March Adidas Half Marathon, Silverstone. www.brps.org.uk ●10 April Charity Cabaret Night at the Wessex (Newbury) Social and Sports Club organised by Maureen Nickless. A fab evening for £5. www.wessexssc.co.uk

●31 May Bupa 10k London Run ●19 June AGM / Members Conference including the National Raffle Draw. www.brps.org.uk ●11 July Asics British London 10k www.runtofightblindness.org.uk ●5 Sep Adidas Women’s 5k Challenge www.womenschallenge.co.uk ●5 Sep The Great British Duck Race www.tinyurl.com/rpduckrace ●11-22 Sep Namibia RP Project Challenge www.trektofightblindness.org.uk ●25 & 26 Sep Stride 4 Sight www.brps.org.uk ●26 Sep Run to the Beat Half Marathon www.runtofightblindness.org.uk

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Three New RP Research Grants Approved In February, RP Fighting Blindness announced three new research grants totalling nearly £⅓m to investigate potential treatments for retinitis pigmentosa. The grants go to Professor Alan Wright in Edinburgh, Mr Andrew Webster at Moorfields Eye Hospital and Professor Graeme Black at Manchester University The Trustees approved the three awards on the recommendation of the Medical Advisory Board (MAB). David Head, Chief Executive at RP Fighting Blindness, said “All three of the lead scientists involved in these projects are well known to us as we have supported their work in the past, and we are proud to do so again. We couldn’t do this without the support of our members and fundraisers though - it is largely people with RP themselves who have made this research possible.

“The projects are all exciting and reflect the progress being made generally in RP work around the world and we are already looking forward to their outcomes.

“We have other projects in the pipeline too for funding decisions later this year and we would particularly welcome financial support for these from company sponsorship.”

Professor Graeme Black at Manchester University receives continuation funding for his work to widen access to genetic testing services for hereditary eye conditions. Professor Black has delivered substantial progress with molecular genetic testing for RP through a previous grant from RP Fighting Blindness and the aim now is to further develop tests for autosomal recessive RP. Currently, Manchester provides an excellent service for X-linked RP and autosomal dominant RP but patients with autosomal recessive RP are more likely to be candidates for gene therapy. Hence this project has an important role in the charity’s work to translate research into treatment in the future. The grant approved is for £170,000 over three years.

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Professor Alan Wright in Edinburgh, who has “an outstanding track record in research into retinitis pigmentosa”, is funded to study the mechanism of photoreceptor degeneration in X-linked RP caused by mutations in the RPGR gene. Mutations in this particular gene are the commonest form of X-linked RP. The charity’s MAB felt that this was a very wellfocussed project working in a very topical area of biology. The grant is for £72,500 over 18 months.

Mr Andrew Webster at Moorfields Eye Hospital is funded to employ a PhD researcher over two years.

The grant for £63,000 will facilitate work on autosomal recessive RP. The MAB report to the board advised that it “is likely that this project will produce significant results” and Mr Webster said that his team’s efforts to identify novel genes causing autosomal recessive retinal dysfunction through autozygosity mapping techniques in consanguineous pedigrees would also be enhanced by plans to exploit recent advances in DNA technology.

RP Heroes We are delighted that Jean and Richard Bartlam, long standing members and stalwarts of our Coventry branch, have been named “Volunteer Hero” in the Pride of Coventry and Warwickshire Community Awards.

The prestigious Barclays-sponsored award was presented at a gala dinner ceremony at the Ricoh Stadium.

Jean said “It’s nice to know people appreciate us”. We think this is a big understatement. Without people like Jean and Richard supporting the branches, RP Fighting Blindness couldn’t provide the support it does to people with RP or raise the research money it does. We are indebted to the Bartlams and many like them.

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und raising fund raising fund raising fun From our volunteers across the UK Big thanks to Mark Young, who ran in the Dublin marathon, a fantastic feat. He raised £1,618 for RP Fighting Blindness – very impressive! The picture shows him in the Dublin Marathon on the 26th October 2009, with his wife Caryn who has RP, his children Liam and Keira and his mother and father-in-law Liam and Philomena Davison.

“Stride for Sight” Takes place this year on 25th and 26th September 2010 Let’s make this the biggest ever RP walk and encourage as many members and supporters as possible to be part of a great weekend.

Contact michelle@brps.org.uk if you would like support arranging a local Stride for Sight in your town.

Thanks Great Places!

Thanks to Great Places Housing Group who donated £166.67 to RP Fighting Blindness following nominations from their employees.

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Brothers’ Marathon Fundraiser for RP Brothers Oliver and Roger Backhouse (amongst many others, we should point out) have taken on the London Marathon challenge for RP Fighting Blindness. Roger has RP, and Oliver (pictured below) is an eye surgeon based in Leeds, so both of them know all too well how important it is to keep the research money coming in.

The brothers have been particularly impressed with Professor Ali’s work at Moorfields, working on both gene therapy and stem cell research, and have asked their sponsors and supporters to help fund this work. Amazingly, in just a few months, and as we go to press, they have already raised £55,000 – and still going strong.

Professor Ali said “We are very grateful to (the brothers) for their hard work and dedication to supporting our mission. Raising £50,000 for RP research is a fantastic achievement and will help to accelerate the development of effective treatments. The gene therapy approaches that we have developed are now showing great promise in clinical trials. With this sort of support we will be able to continue and expand our clinical trials and develop these treatments for many different forms of RP. It is a very exciting time and thank you again for helping us to change the future for people with RP.” Roger said “I was 13 when I was diagnosed with Retinitis Pigmentosa.

This has meant not being able to see in the dark, not being able to study medicine as my planned career, not being able to drive, and knowing that, gradually, I am losing my sight. RP has affected my grandfather, mother, uncle, first cousin, and will affect future generations. It is so exciting to feel that we can, at last, make a real difference. Any donation, however small or large means so much and is making the training not just bearable, but a real joy.

You can donate at www.justgiving.com/blindasabat

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Fisherman’s Friend Strongman Run 2010 Stuart Ray will be raising funds for RP Fighting Blindness by taking part in the Fisherman’s Friend Strongman Run 2010 in Germany's Rhine Valley. The run takes place on 18th April and is not for the faint hearted - it is a gruelling, challenging, tough, muddy and full on race, but it is also lots of fun! It extends across 18km and has 32 obstacles.

Check out http://strongmanrun.com.au for further details about this race.

Trek to Peru In order to raise funds and awareness for two chosen charities, Yvette Chivers and a group of friends from Cambridge have decided to embark on a trek challenge (Peru Inca Trail) in October 2010. The chosen charities are RP Fighting Blindness and South American charity Alalay.

Those taking part in the 10 months of fundraising and the final challenge are: Aimee Chivers, Yvette Chivers, James Beeson, Ricky Webb and Rob DeRoy with a team fundraising target of ÂŁ15,000 The group have set out to raise the funds needed for the actual trek through self planned events (which will also raise awareness of the charities themselves) leaving any personal and corporate sponsorship as well as collections to be directed straight to the charities. The group are also encouraging anyone wishing to help raise funds and awareness to get in touch, and organise their own events, from simple raffles right through to fully organised music events. Any companies/promoters willing to donate a percentage of a day/event will be given as much publicity in return as 18

possible. The challenge will also be highly featured in local media throughout the year.

Yvette Chivers suffers from RP and for the past 5 years has been focusing on raising awareness of the fact that RP is not just an older person issue. She’s a DJ and puts on club events, very often with fundraising links for the charity.

Friends of Alalay (Santa Cruz) is a charity set up by Annie Syrett (based in Bristol) which finds, feeds, houses, educates and loves street kids in Santa Cruz, Bolivia. Every penny raised goes directly to help the kids.

The group chose to raise for this charity too, as they wanted to help a community in South America. The group will travel to Bolivia to visit and help the charity, as well as personally present the funds raised. For more information visit www.alalay.co.uk To date the group has planned one music/arts event per month. It will be organising the Strawberry Cafe at Strawberry Fair in Cambridge in June, and will be pulling off various stunts around the city and beyond to build awareness and help the causes. Collection boxes will be placed with willing businesses around the city, and anyone wishing to help should most definitely get in touch via info@ne-xcuse.co.uk or 07775 435534. A justgiving.com web page will also be launched shortly.

Virgin London Marathon 2010 Please support our Gold and Silver Bond place runners, plus the own-place runners who have pledged to raise money on our behalf, in this year’s Virgin London Marathon. Each of them will be taking on the dual challenge of running 26 miles and raising a significant amount of money for the charity.

Please visit their justgiving pages to donate (see below) and if you can support them on the day en route on the 25th April in London. T-shirts are available from the office if you would like to be part of the cheering crowd. Good luck to everyone and keep up the fantastic work.

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RP Fighting Blindness London Marathon Runners Gill Barnes www.justgiving.com/GillianBarnes Colin Phelan www.justgiving.com/colin-phelan Ken Reid www.justgiving.com/kenreid59 Oliver Backhouse www.justgiving.com/Oliver-Backhouse Roger Backhouse www.justgiving.com/blindasabat Sarah Gale www.justgiving.com/SkunkGoesRunning Doug Rycroft www.justgiving.com/dougrycroft Vera Stuckey www.justgiving.com/SkunkGoesRunning Sarah Gilliver www.justgiving.com/gilliversgallop Ruth Newman, Russell Sheer, Donna Thomas, Alan Hinton, Kirsty Weston __________________________________________________________________

The New John George Award

By Colin Mcarthur In late 2007 our member, helpline volunteer, supporter and friend Muriel George lost her husband John, also a member, in a road accident whilst they were returning home from an RP event. Muriel herself was badly injured but through this difficult time has kept in touch and continued to support our work.

We are now pleased to announce that in memory of John, Muriel will be making a donation in his name each year, and we will be awarding the RPFB John George Award for volunteer services to the charity. The first award will be made at our Members’ Conference in London in June.

Members and our Branch Officers are invited to nominate people to receive the award. These will be shortlisted by a small group including Muriel and our Trustee Colin McArthur, and then the winner will be announced at the conference. Shortlisted volunteers will receive a certificate; the winner will receive a certificate and the award itself as a permanent reminder of our gratitude for their support and of the importance of volunteers to our work.

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Anyone who has contributed as a volunteer can be nominated, and the rules are quite straightforward: the nomination is for voluntary work, staff and trustees cannot be nominated any voluntary work qualifies, from fundraising to supporting people, to practical help nominees do not have to be members, but you must be a member to nominate someone you do not have to tell the nominee, but do please bear in mind that we will contact him/her about the award nomination should be by letter or email of two or three paragraphs outlining why your nominee should be recognised nominations must be made by 1st April 2010 the panel's decision is final To nominate someone for the award, please send a letter or email to The John George Award, c/o Colin Mcarthur. This can be emailed to info@brps.org.uk marked for his attention or posted to Colin Mcarthur, RP Fighting Blindness, PO Box 350, Buckingham, MK18 1GZ. If you would like to similarly support or sponsor an award from 2011 onwards, please let us know.

Thanks for the Memories: MBE February 2010

By Mary Guest The award of an MBE in the New Year 2010 Honours List was quite a shock, a nice shock but still something that happens to ‘other people’. Since then I have been very touched by the cards, letters and messages, which have come from you the members. So I wanted to say ‘thank you’ and touch on some memories through the pages of the Newsletter.

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It all started with a telephone call back in 1971 from a Social Worker with deaf people in St Albans. A young deaf man had just been registered blind, she said. He needed urgent help with language and spelling before he lost his sight. But I was a teacher of the deaf; blindness was not my scene and as for retinitis pigmentosa, I’d never heard of it. My search for information about what it was and how to work with a profoundly deaf person yielded nothing but a finger-spelling chart.

In 1974 on a 3 month stay in California while my husband John worked with NASA the lack of good information about RP began to change when, by amazing coincidence, I saw an advert about retinitis pigmentosa on a freeway. On joining the National RP Foundation I was sent the best information available about RP, about Usher syndrome and about research. Thus began my entry into the world of RP. It was thanks to the National RP Foundation that I was linked up with Lynda Cantor and others in the UK. In the spring of 1975 we met at the National Liberal Club in London and it was there that we decided to form the British Retinitis Pigmentosa Society. At first we got some criticism from other agencies serving blind and partially sighted people who were worried about duplication but by Spring 1976 and after Lynda did a piece on Radio 4’s ‘In Touch’ we had over 400 enquiries from people who were anxious and keen for more information about their eye condition. From then on the charity grew steadily, branches formed and we established contact with the medical and research fraternity.

In the early days the urgent need was for information about retinitis pigmentosa and it fell to me to put together the first Guide to RP, which I would not have attempted without help from people with RP and their families. Thank you. You taught me about the effects of slow loss of vision, about how it works in some settings but lets you down in others, how the thought of blindness in the future affects the present, how diagnosis affects family members, and much more.

Editing the Quarterly Newsletter for 6 years until 1983 was a lot of fun too although sometimes it was all a bit hand to mouth in the early days.

For a while John and I even recorded it onto tape and had much merriment getting our tongues around such a phrase as, ‘deep fat fry fryer’ in a section on safety in the kitchen.

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Information on RP also tied in with the welfare aspects of the work of the charity and my fondest memories relate to the work of the then Welfare Committee. The word ‘welfare’ has mixed connotations today; we saw it as being able to offer understanding and knowledge specifically related to people with RP conditions. The charity as it is today with the Helpline, information about all aspects of RP and members within the branches attuned to the emotional and practical effects of RP owe much to the efforts of the original members; namely Nina Aberdein, Elizabeth Baio, Bob Gould, Barbara Norton, the late Jeanette Patching and Eva Scarrott.

Apart from me each member was severely visually impaired and was prepared to brave the uncertainties of the railways in order to meet regularly to carry out the work.

In 1983 I joined Sense and started another journey into the world of deaf people who have RP i.e. Usher syndrome, which has been equally challenging and so, so interesting.

Again, dear members, thanks for the memories. Thanks for sharing your experiences and for the support you have given me. It has all helped in our goal for a better life for all people who have RP related conditions.

branch news branch news branch news b from our volunteers across the UK SOMERSET Tom Graham As the gloom over the economy lifts a little, we also hope for more success with fund-raising. It has not been easy nationally, and although our collections have held steady in like-for-like store and street collections, it has been difficult to get as many slots as in former years. We have, however, had innovative efforts from

members, including Haydn Callow and Dennis Murray.

The net result, however, is that our contribution of £3,500 to the research funds is down on the last few years.

Norman Salter has taken the lead in organizing a Coast-to-Coast tandem ride from Burnham–onSea to Seaton. The idea is to have two tandems, with our 23

members doing 10 mile stages on the back saddle. We have provisionally fixed 15th May for the event.

Because of the difficulty of personal contact with members in our rural county, we have now set the objective of phoning each member and associate at least once each year. This has been a rewarding exercise so far, and gives us a much clearer picture of our membership.

NORTH WEST Colin Shuttleworth The region's biggest fundraising event will soon be upon us. The Nantwich Jazz Festival takes place over the Easter weekend and is well attended, with a host of renowned artists on show. Our chairman, Kevin Johnson, has fronted the RP effort supported mainly by his family but more help is needed if we are to take full advantage of this opportunity.

Assistance is required with the evening raffles in particular, and helpers would have free entry to the concerts. If you can help please contact Kevin on 01744 818235 or email kevinjohnson148@btinternet.com

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The branch has organised a social weekend at Windermere Manor on 28-30 August.

Everyone is welcome at this great getaway and it is well worth the ÂŁ115 per person for such a splendid venue. For more information contact the hotel on 01539 445801.

Another date for your diary is the North West AGM at the Christopher Grange Centre, Liverpool on Sat 17 July (final arrangements in a further bulletin issued closer to the date).

Please keep us updated of your contact details, in particular email addresses (the easiest way of keeping you informed). Email: colin.shuttleworth@virgin.net

HEAD OFFICE David Head As some of our readers may already be aware, sadly our long standing member Eunice Higgins passed away in early February.

Both Eunice and her husband Selwyn have been extensively involved in the charity for many years and have always been staunch supporters. The office team and many of our members regard them as good friends.

Selwyn will also be known to

many readers as a previous Newsletter Editor.

Sir Alan Rudge, our chairman, said “The board express our sorrow and offer our condolences to Selwyn at this time.” An obituary will appear in the summer issue of this newsletter, but in the meantime Selwyn has asked that donations are made to RP Fighting Blindness in lieu of any flowers. If you would like to do this please send your donation to the office clearly marked “in memory of Eunice Higgins”.

EAST OF SCOTLAND Jim McLean All is well with the E of S branch and looking forward to yet more good news on the medical front this year. (No pressure on the medical folk out there, but it’s true to say that good news encourages us all.)

Our meetings for this year are all set up and the latest newsletter pulled together. I like to contact our members 3 times a year both by email and in hard copy (via our secretary Aileen). We have a scattered membership many of whom do not find it an easy prospect to get to Edinburgh.

Contributions from any one of us are circulated. That way people know they are not alone and are kept in touch – the feedback is always good. I find the sharing of knowledge works wonders.

Fundraising last year was brilliant with some of us donating in many different ways. It’s amazing what can be done with imagination and lots of enthusiasm. Try it, you’ll like it! You’ll even be amazed what you find down the back of your sofa(!)

This year I’m going to try and learn new tricks, Facebook in particular. One of our new recruits, Colin, says there is a thriving RP community on it. I’m sure we could reach out to a lot of fellow RP sufferers who may not know about us.

Contact tel. 01324 553463 or jimuckmclean@blueyonder.co.uk

SOUTH WALES Marian Evans We have high hopes for 2010. In February we’ll be enjoying another fundraising coffee morning in Carmarthen, while in April, Ruth 25

Newman of Swansea will be representing RP in the London Marathon.

be able to spare an hour or so shaking a can, then please do get in touch.

Our target is to raise £2,000 in sponsorship, so please support us and her. We’ll shortly be sending out sponsorship forms because – as the saying goes – every little helps.

We will be holding our next meeting on Saturday 17 April, once again at the pleasant surroundings of the St Lawrence Parish Room in Colebrook Street, Winchester, starting from about 10:30. We look forward to welcoming Professor Alison Hardcastle and Professor Mike Cheetham, who will be describing their important research work at the Institute of Ophthalmology.

Do join us for what promises to be an interesting and enjoyable time.

We have a new venue for our next meeting on Sunday 4th April, which will be at the King Hotel, St Teilo Street, Pontarddulais, SA4 8LQ. They do a great Sunday lunch. Anyone wishing to partake, please ring Marian on 01554 821531. We look forward to seeing you.

HAMPSHIRE Steve Harris We were delighted to be able to send a total of £18,250 to the Research Fund during 2009. Very many thanks, and well done, to everyone who worked so hard to help raise this superb amount, which contributes so much to keeping our vital research projects properly funded at this time.

We will be starting our 2010 street collection season soon.

We are always glad to welcome extra help at our collections, so if you know of anyone who would 26

We were very sad to learn of the recent death of one of our former members, Eunice Higgins We send our sincere condolences to Selwyn and the rest of the family.

If you would like to know more about the meeting, or about our collections, then please call us on 023 8047 6894, or email hampshirebranch@brps.orguk

CROYDON BRANCH Joan Raccagna Our collection at Sainsbury's raised £195 which was not bad considering the snow.

Our branch meeting was held on Saturday 27th February at a the CVAB, Bedford Hall, 72-76 76 Wellesley Road, Croydon where we showed the DVD "Living with RP". Everyone is welcome to come along to Croydon meetings and free refreshments are always available. Your local contact is Joan Raccagna who can be emailed at Joan.Raccagna@croydon.gov.uk

CAMBRIDGE BRANCH Sue Drew On the surface it might appear that the Cambridge Branch has been fairly quiet over the last year or two, with the only activity being the very occasional sional meeting and the odd store collection.

handmade greetings cards which are sold in aid of the medical research fund. This started as a very small past time and has lead to various rooms being commandeered and transformed into small card making factories in some homes! I’m very happy to say that in a relatively short time we have raised over £400. £ In addition to the Namibia trek, one of our intrepid members, Yvette Chivers, is embarking on her own fundraising trek to Peru this year! See the Fundraising news section. sue@brps.co.uk

DEVON & CORNWALL Julie Allen A

Doubling our efforts this year, we now have four people signed up to take part in this year’s epic trek to Namibia!

I can only imagine what it must be like training for a marathon. I am sure however that the wintry weather we have been experiencing hasn’t helped. For those of you training for marathons, and in particular Sarah Gale and Vera Stuckey who will be running ng in the London Marathon, may weather conditions become conducive to training. If you haven’t sponsored Gale and Vera yet and you would like to, please contact me.

Due to the creative talents of some of our volunteers and friends, we have been making

At our Christmas social, we heard about recent medical developments from Professor

However, in reality there has been activity taking place in the background. For example, some of our members took part in the much reviewed Sahara trek last year, and raised a total of over £7,000 between them!

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John Marshall. The photo below shows Mr Graham Harford presenting Professor Marshall with a cheque for money raised in the region at the end of a question and answer session after the talk. Our thanks go to Professor Marshall and his wife for joining us at our annual get together. joolsallen@hotmail.com

Cannon continue to be regular fund raisers in Leighton Buzzard, contributing £1,513. Many thanks to everybody who did help in any way to raise funds in 2009.

It will be very challenging to beat last year’s total, but with a bit of help from a few more members we might come close. Nicky and I would be happy to support or advise anyone willing to hold an event. Please find below a list of events already planned for 2010. ●19th March - Disco W.G.C. ●5th June - AGM, Potters Bar 2pm-4pm (Speaker CEO David Head)

HERTS & BEDS BRANCH Jon Addison We had a very successful 2009 with £13,716 sent to the research fund, the bulk of it coming from a handful of sources. Noteworthy contributions were a golf day held

by Rayner Essex treasurer Laura Addison's company which raised a fantastic £3,430. The annual disco that my wife Nicky and I hold raised £3,029, and an unexpected gift by John and Andy gave us £1,045 by asking their guests to donate to RP instead of gifts at their civil wedding. Lance and Andrea 28

●24th July - St Albans Collection ●4th Sept - Harpenden Collection ●4th Dec - Xmas branch get together - Potters Bar 1.30pm 3.30pm

COVENTRY & DISTRICT Leigh Kelly Congratulations! Jean and Richard Bartlam founded the Coventry branch on 27th June 1979. Since that time they have worked tirelessly as Secretary and Fund Raising/Welfare Officer running the branch. After a lot of

soul searching they have decided to step down from their roles but are remaining on the committee. As a thank you to Jean and Richard, myself and another of our members, on behalf of our branch, nominated them for ‘Volunteer Hero Award’, a category in the prestigious Pride of Coventry and Warwickshire Community Awards. An awards ceremony was held at The Ricoh Arena, Coventry on 5th February, where 12 members of our branch went along to support Jean and Richard. I am delighted to say that they were winners in their category. They were presented with a certificate and a trophy. As winners, a short video was shown, which along with the newspaper coverage has helped raise awareness of RP.

Congratulations from us all, it was a very well deserved award.

Following our AGM in February we have decided to now hold four meetings a year: June, September, December and March. Same place, Coventry Resource Centre for the Blind, Earlsdon Avenue South, 8.00pm 10.00pm, always the first Tuesday of the month. Our next meeting is on 1st June.

Is there someone out there who would like to be our Secretary or Fund Raising Officer? Please contact me if you want further details Our branch raised just under £8,000 last year and it is more important now than ever before that we keep up the fund raising as we are getting closer all the time to finding a cure for RP. leighkelly@talktalk.net.

goods services goods services goods se Member Launches First Novel Penny Rudge, one of our members who has Usher’s Syndrome, has just achieved one of her ambitions with the publication of her first novel ‘Foolish Lessons in Life & Love’, a black comedy set in London.

Congratulations from all of us Penny!

Billed as a “warm and wonderfully funny first novel that launches a memorable new literary matriarch”, the story recounts the experience of 29

23 year-old year old Taras Krohe, wedged between his Russian girlfriend, Katya, and his overbearing Bukovinian mother. He is devoted to both women in different ways but then Katya leaves him for a ponytailed aesthete – and his mother, he realises, he will never be able to escape. The story takes place in South London and recounts the events which unfold when his mother’s benefactress Mrs Bartlett passes away and Taras decides to uncover the secret behind his family’s descent into disaster.

The novel has been described by Andrew Motion as a first novel with “exceptional freshness, clarity and vitality”. Penny is currently studying for a PhD in Creative Writing. Further information ation from Zoё Zo Hood, Publicity Manager, Little Brown, tel. 020 79118070. _______________________________________________________

Perkins Braille Machine Wanted I am seeking a Perkins Braille machine in good working order. I am just about to embark on a year’s ar’s course on my level 2 braille. Contact Katy Newitt on tel. 01258 830160, leaving a message (I’m often away) and I’ll get back to you at the first opportunity, or email newitt@emirates.net.ae newitt@emirates.net.ae. _________________________________________________________ ______________________________________________________

All Occasion Greeting Cards Sharon, who suffers from RP, is selling cards to raise money for RP Fighting Blindness on Ebay.

Sharon says: “My My Mum Sheila and I make and sell allall occasion greeting cards to raise money for this charity, so they can fund as much research as possible to try and find a cure.

You can place a donation or buy a card which starts from 50p to £1 for 30

A4 size. We also do specially made cards (boxed), which start from £3.50 depending on the card.”

The family also sell the cards in their local post office and at table sales each month in the co-op. You can contact Sharon at email@smetcalfe.plus.com or visit her ebay site at www.tinyurl.com/sharonmetcalfe, where you can also see what else she is selling to raise funds

Crossword Puzzle No. 8 (Spring 2010) 1

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WIN a bottle of Australian wine by entering this unusual crossword competition.

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Send your grid to: RP Members Crossword 8 P.O. Box 350 Buckingham MK18 1GZ

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

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

Postcode: .........................

This unusual crossword is not what is seems, don’t take things too literally!

Closing date: Monday 12th April 2010

Across 1. Hit hard with the fist (5) 6. Magazine that expired in 2002 (5) 7. Metalworkers tool used to create an impression (5) 8. A mixed drink of fruit and alcohol (5) 9. Glove-puppet character (5)

Down 1.

2.

3.

4.

5.

Small green vegetables (5) Female sheep (5) Chickens (5) The oceans (5) Dropped by cockneys (5) 31

Membership Renewal Form 2010

Full Name Membership Number (or postcode if not known) Telephone_____

Email

________________

_____

____

I pay by standing order and have asked my bank to amend my payment to a minimum of £20.

I enclose a cheque to ‘RP Fighting Blindness’ (see below)

I have made payment online using my credit/debit card

o o

I am a UK taxpayer; please claim gift aid on this subscription (and any donations I make) on my behalf OR I am not a UK taxpayer

Membership subscription ______________________________£20___ Additional donation ___________________________________£_____ Total Enclosed______________________________________ £_____ Please send this form to the office address below. Thank you.

About RP Fighting Blindness (BRPS) Charity No. 271729: We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. Our Helpline is on 0845 123 2354 or at helpline@brps.org.uk.

Our contact details: PO Box 350, Buckingham, MK18 1GZ Tel: 01280 821334 E-Mail: info@brps.org.uk 32