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Quarterly Newsletter from the British Retinitis Pigmentosa Society Your

Summer 2009 Issue (No. 131)

Inside ... Membersâ€™ Conference and AGM Programme Planning the Next Five Years News From Around the Branches Neurotech Announces Clinical Trial Result Sahara Trek is a ÂŁ70,000 Success Successful RNIB Campaign for Mobility TV Quiz Opportunity Run for Us to Fund Research Two MBEs for Our Members ... and lots, lots more.

Gentle Reminder Membership Renewal There are still a few members who have not paid subscriptions for 2009. If you are amongst these, please complete and return this form with your payment, thank you. Full Name Address Postcode

Tel

Please renew my membership for 2009 for £15

I enclose an additional donation of £

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Signature

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Please send this form and your cheque payable to: “RP Fighting Blindness” to the office address above, thank you. We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. Members can contact the Helpline on 0845 123 2354 or at helpline@brps.org.uk. Membership also entitles you to receive this quarterly newsletter, which can also be downloaded from the members’ area of our website at www.brps.org.uk (Your password is “retina”). PO Box 350, Buckingham, MK18 1GZ Tel: 01280 821334 E-Mail: info@brps.org.uk Charity No. 271729 2

Contents Letter from the Chief Executive

Five Year Strategy and Development Plan 2009-2013

Members’ Conference and AGM June 2009 ..

Ophthalmology Research Award for Prof Robin Ali..

A Sandy Tale - Sahara Fundraising Trek ..

Breaking Down Barriers - Sahara Trek

Breaking the News ..

RNIB Campaign Brings Parity of Mobility Allowance

Growth Factors – An Exciting Avenue of Research ..

Branch News ..

In Memory of ..

Aquathlon in Aid of Eyes for Life

Cookery for VIPs - Buy a Book

News Snippets

Crossword Solution No. 4 (Spring 2009) ..

...

Calendar Dates

Calling all Quiz Buffs

Trek to Everest Base Camp

.. ..

Crossword Puzzle No. 5 (Summer 2009) Two MBE Awards

CDs to Replace Audio Tapes ..

Run for Us to Raise Research Funds

Get your tickets for this year’s annual prize draw before 20th June Prizes include a holiday in Bulgaria, High Street vouchers, and plenty of others. You can order tickets by contacting Colin McArthur on 01983 406 661. Please help us reach our target of 20,000 tickets.

Letter from the Chief Executive Dear Members, Another busy quarter has passed with lots of developments at RP Fighting Blindness. We’ve appointed a volunteer Newsletter Editor (thanks to Liz Cassidy!), dealt with several new research grant applications, planned the Members' Conference in June, completed our first overseas fundraising challenge, launched an Outreach Project with a staff member fully funded by a charitable trust, installed a new membership database, and finalised our next 5 year plan to 2013. I was truly privileged in March to join a bunch of members, many with RP, on our Sahara Desert fundraising trek. The group was inspirational. "Thanks", no matter how heartfelt, cannot possibly convey my gratitude for their successful fundraising (over £70,000 in sponsorship), and for rising to the challenge. What a fantastic experience! Building on this outstanding success, we are taking a group to Namibia in September 2010 to work on a school renovation project. See details on our website and in future news items soon. To secure one of the 30 places on our second challenge, contact myself or Michelle as soon as possible. We've finalised the RP Fighting Blindness accounts for 2008. It was another good year, with income excluding legacies up on 2007 and a record commitment now to research grants. The full audited “Trustees Report & Accounts 2008” will be published and offered for your approval at the Members' Conference and AGM. You’ll find the programme and agenda further on in this Newsletter. We are asking for your help to make another event a success: our first national fundraising concert. A whole symphony orchestra, concert pianist, and the outstanding singer Denise Leigh are performing for us on Friday 30th October. Please, please save the date. Tickets will be issued next month and are available to members and their families first. Enjoy this summer issue and, as ever, many thanks for all your support! David Head MBA 4

Five Year Strategy and Development Plan 2009-2013 by Stephen Jones, Development Manager Our avid readers may recall that in the Summer 2005 newsletter we described the first 5 Year Plan 2005 to 2009. It set ambitious targets for the society including a substantial increase in both income and spending on research, and the recruitment of a Chief Executive in 2007. The plan period is not yet up but RP Fighting Blindness is on course to meet its targets, successfully accomplishing the plan’s main objectives. Work began on the successor plan in 2008 with the preparation of a strategy discussion document for the Board of Trustees. This was followed by a request to David Head and myself to prepare a draft 5 Year Plan for consideration in early 2009. After a lot of work and taking soundings from within the organisation, a draft was produced and the trustees approved the new 5 Year Plan at their meeting on 29th April. The full Plan is on our website for scrutiny in the members’ area (password “retina”). I encourage members to take a look, if only to scan the essential points. Again, the trustees have opted for bold growth to achieve our ambitions of funding significantly more high quality research projects and improving our services to members. 2009 will be a year of consolidation, followed by carefully planned growth. This will require a considerable increase in staffing, while remembering that we are grounded in our members and their great work on a volunteer basis. Key points of the plan include setting an annual target of £2.6 million of income by 2013 and research expenditure growing to £1.7 million, approximately £1 million more than in 2008. Governance changes include a proposal to make RP Fighting Blindness a company limited by guarantee, while retaining its charity status (explained fully in the plan), and replacing the Management Committee with an advisory group and two specialist working groups. The Helpline Committee and the Branch Chairman’s Committee will continue their excellent work as before. The essence of the plan is to fuse added numbers of paid professional staff with the stalwart, volunteer membership in order to achieve our objectives in terms of research funding and services to members. We hope you will give the plan your enthusiastic support. 5

Members’ Conference and AGM 20th June 2009 by David Head The AGM and Members’ Conference will be held in the Millennium Stadium in Cardiff on Saturday 20th June. The charity's AGM forms the opening session of the annual Members' Conference, which this year includes the launch of our new patient information DVD, and two keynote speakers, Sarah Rochira from RNIB Wales and Dr Lyndon Da Cruz from Moorfields Eye Hospital. There will also be a range of exhibitions and stalls open from 10.00am, and the conference will run until 5.10pm. The Riverside Terrace, within The Millennium Stadium, is a very short walk from the station and the car park. The event will be held all on one floor and members are welcome, as ever, to bring partners, sighted guides, and guide dogs. The full programme for the event is shown on the next page and on our website. This is an important time for the charity and for RP research. Members are strongly encouraged to take part in the event. This is your annual opportunity to hear the latest news from clinical trials at Moorfields, ask questions of the researchers, to have your say about the future of the charity, and to meet the trustees, staff, and other members. Tea, coffee and biscuits will be provided and there are several cafes and sandwich bars close to the venue. Accommodation at the nearby Holiday Inn is available at a reduced rate. If you intend to book a room, please speak to Louise Gay on 02920 347208 and quote "BRPS Conference" for the reduced rate of £90 per room including breakfast.

Programme 33rd Members’ Conference and AGM Time 10:00

12:00

12:35 12:45

13:35

14:20

14:50

15:30

17:00

Event opens Reception open, exhibition area open Tea, coffee and biscuits available Lunch Delegates are invited to bring their own refreshments. Tea, coffee and biscuits are available. Local cafes and sandwich bars are a short walk of the venue. Exhibition area open. Helen Rourke will sing for us in the main auditorium. Plenary Session 1. Chair: Roger Green RP Fighting Blindness AGM including • Chairman’s Welcome • Minutes of the 32nd AGM • Trustees’ and Treasurer’s Reports • Chief Executive’s Report • Elections and Resolutions Plenary Session 2. Chair: Carole Holmes • Information & Support Services, an update • Guest Speaker: Sarah Rochira, Director, RNIB Cymru • Welfare Rights Services for People with Sight Loss Break Tea, coffee and biscuits available. Delegates are asked to reconvene for 14:50 sharp. The Annual Prize Draw winners will be drawn. Plenary Session 3. Chair: David Head Launch of the RP Patient Information DVD • Background to the project • Presentation of the DVD Plenary Session 4. Chair: Prof John Marshall Medical and Research Update • Keynote Speaker: Dr Lyndon Da Cruz, Moorfields Eye Hospital • Guest Panellists • Includes Question & Answer session Chairman’s Closing Comments 7

Notice: Membersâ€™ Conference and Annual General Meeting of RP Fighting Blindness Members are advised that the RP Fighting Blindness AGM will take place as part of the Members' Conference on 20th June 2009 at The Millennium Stadium, Cardiff, commencing at 12:45. AGENDA Chairman's Welcome (a) Minutes of the previous meeting and matters arising (as published in Autumn 2008 Newsletter) (b) Trustees' Report 2008 (c) Treasurers' Report 2008 (d) Resolutions: 1. Adoption of Report and Accounts 2008 2. Reappointment of auditors (e) Chief Executive's Report, introduction of 5 year plan (f) Questions from the floor (g) Resolutions: 3. Members endorse the charity's plans for growth and increased investment in RP research over the period 2009-2013. 4. Members support the dissolving of the Management Committee in light of the recruitment of staff over the last year and the creation of the Fundraising Working Group and Services Working Group. 5. Members re-appoint for three years within this new structure i. Colin McArthur as Voluntary Fundraising Manager ii. Stephen Jones as Retina International Representative iii. Kevin Johnson as Branch Liaison Officer iv. Carol Holmes as Voluntary Information and Support Officer. All have agreed to nomination and are nominated by the Chairman. (h) Closing remarks 8

Ophthalmology Research Award for Prof Robin Ali In April, tribute was paid to Professor Robin Ali for his ground-breaking work on eye health therapies. He received a prestigious award, as reported by University College of London below. We already covered in previous news items the remarkable results for patient Steven Howarth, which you can re-read on our website. Robin Ali, Professor of Human Molecular Genetics at the UCL Institute of Ophthalmology, has won an Alcon Research Institute Award for his outstanding contribution to advancing eye health. The award was made in recognition of Professor Ali’s work in the development of gene and stem cell therapies for the treatment of retinal disorders. He demonstrated improvement in vision in a patient with an inherited retinal degeneration following gene therapy in a clinical trial in 2008. Professor Ali was nominated by previous winners of the award. He will receive $200,000 in unrestricted grant money to continue his research into the underlying causes of eye disease and has been invited to present his research at the 2011 Alcon Research Institute symposium. Professor Ali said: “I am honoured to have been recognised by this illustrious group of ophthalmic researchers.” The Alcon Research Institute supports global advancements in eye health by honouring those who make outstanding research contributions to the vision sciences and providing grants to fund ongoing research. This year six awards were made. The institute is part of Alcon, an international eye care company founded in the USA that produces pharmaceutical and consumer products.

Source: University College of London http://www.ucl.ac.uk

** If you have not paid your 2009 subscription yet please see Page 2 ** 9

A Sandy Tale - Sahara Fundraising Trek 7-14 March 2009 by Steve Bateman Trekkers: Jim “The Camera” Adamson, Mark “Early Riser” Baxter, Steve “Following in your footsteps” Bateman, Alan “Chicken tonight” Chamley, Ian “Desert Fox” Cunningham, Richard “Red Rose” Padmore, Graham “Blister Man” Drew, Steve “Gene Genie” Howarth, Bev “I Want to Hold Your Hand” Hollingsworth, Steve “Side Netting” Hollingsworth, Nicky “The Lupin” Jones, Fiona “Sisters Are Doing it for Themselves” Nicholas, Veronica “Joie de Vivre” Perrin, Chloe “Kamikaze” Scaplehorn, Helen ”Calendar Person” Leivers, Karen “Casablanca” Young, Trish “Can’t We Go Faster” Waterfield, Toby “Swansea Slogger” Warren, Dave “Rocky” Gibson, Chris “Cool Clothes” Woodhead & David “Vidal Sasoon” Head. The trip took in four full days’ trekking in the Sahara, with another two days at each end for flights, exploring the sights and shops of Casablanca, and overland travel to and from camp. Despite some lost luggage, bumpy rides and blisters, we were all set for the trek as the week began. Monday 9 March dawned to typical Sahara weather, cloudy and raining. After a hasty removal of bags and equipment from the girls’ tent, we ate breakfast there. As the rain abated, trek leader Hugo Ifler led the warmup exercises for the first day’s walking. Then off we set behind Hassan, the Moroccan guide, laden with equipment and copious water supplies. After an hour or so, Ian was having problems. The trek doctor Julia Martin’s view was that a hospital visit might be needed and the fourwheel drive vehicle was radioed for a rendezvous. Ian, a strong walker and experienced desert trekker, must have been terribly disappointed. The sandy terrain undulated gently with some stones and bushes to avoid. With my limited sight, I followed in Hassan’s footsteps. This was made all the easier by his readily-spotted white crocs. We met the vehicle for lunch and mint tea, and to replenish our water supplies. After a tiring but uneventful afternoon’s walking, we reached our camp for wipe washes, drinks, evening meal and much conversation. 10

Tuesday was bright and sunny. Ian had improved so hospital was postponed. After a short walk, we came across nomads’ tents. They offered us mint tea and biscuits, and a glimpse of their timeless lifestyle. Hassan indicated a hill studded with three trees as our lunch destination. It seemed an eternity before we got there. On the way, the four-wheel drive met us with more water, but got stuck in the sand and had to be extricated with muscle and Mark’s spade. The afternoon involved an optional extra half-hour walk to a local village. Hassan explained village life and the laughing children vied to hold Bev’s hand. The next day we had a film crew in our midst. Hassan explained the night’s noises: the 5 o’clock arrival of the crew and a donkey marriage. The walk began with a 120-metre climb up to a rocky then sandy ridge. Then there was the chance to run 300 feet down a 60 degree sandy descent. Chloe was rescued from her first attempt at a fall, but not her more spectacular second. Everyone seemed exhilarated at this opportunity for an adrenalin rush. Ian rejoined us for this and the following day’s walking. Later that afternoon, we visited a café. Despite its flushing toilet and hot showers, no one deserted the tents that night. The final day’s trekking was the furthest and promised to be the hottest. After an early start, it was 28 degrees at 8.45am. The morning’s walk 11

was fairly flat and, after a salad lunch, it was across the energy sapping sand dunes and onto a plateau. Then it was more sand dunes and a short amble to our final camp. Champagne awaited us and there was much hugging, emotion and sighs of relief at having trekked the Sahara. The trip was a great success. Everyone seemed to gel together into a mutually supportive team. Asking for help was made easy, although asking was seldom required because it was so readily offered. I can heartily recommend the experience to both visually impaired and fully sighted people. Above all, it was highly enjoyable.

Breaking Down Barriers - Sahara Trek by Alan Chamley I have just returned from the Sahara trek despite being registered blind due to Retinitis Pigmentosa. This is what can be achieved when you seize an opportunity in life, then trust that barriers will be knocked down and solutions found along the way. For me, it was a great opportunity, a change from daily routines, an adventure, though I had never had a strong desire to go to the Sahara.

Losing my job in October helped my preparation. I trained alone in snow, cloud and drizzle in flat, uninspiring landscapes. My fundraising ideas took shape. I reached the almost ÂŁ3,000 target shortly before the trek date. Doubts and time whizzed by and suddenly we were off! My lack of vision was a surprise to me as soon as we met at Heathrow. Reliant on Wendy and the boys over the years, I rarely travel alone. Here was a group of strangers with themselves to sort out as well as me. In the Casablanca darkness, I could see little but artificial lights, and colleaguesâ€™ instructions were extremely helpful. I felt very grateful.

The first night’s hotel was plush but ill lit, but we had got this far without any visual disasters. Packing and unpacking my rucksack was rather difficult, with the many zips and straps, and my impatience with it only grew. Careful planning in our lounge at home hadn’t transformed me into the disciplined trekker, transferring items methodically into the sack. I found the trekking hugely enjoyable. An early ankle ache was cured as colleagues rallied round, with bandage and headscarf to raise the heel. The awesome landscapes were beautifully simple. A tree or shrub could become a real feature, a herd of goats or a person an event. The weather was surprisingly cool, with wind and rain on our first morning under canvas. This and a gentle breeze made for perfect walking conditions, with temperatures in the mid twenties to early thirties. I enjoyed the company of several walking companions. I tended to fix my gaze on the ground a couple of metres in front of me, checking for obstacles. I had to remember to look up and admire the scenery. My vision is now like looking at a Monet painting, but what I saw at times took my breath away. My companions pointed out rocks, slopes, or a surprising amount of undergrowth, with scents of mint or chamomile. Due to the care for the visually impaired amongst us, we were becoming a tight-knit, friendly group. And there was the common purpose - raising funds for research into Retinitis Pigmentosa. Cooperation was a look, a steadying arm, a chat, a joke. I told those around me not to worry if I tripped or fell. They would not offend me by joking or poking fun, as long as they didn’t ignore the visual aspect. The evenings were not so easy. I often feel socially uncomfortable in the dark. I detest nightclubs, discos and noisy, crowded pubs. My preferred evening out is with family or friends drinking real ale, eating. So I tried to overcome this feeling of discomfort, but occasionally felt inexplicably lonely. As we talked, we were dazzled by our head torches. However, the food was good - soup, meat, vegetables or chick peas, couscous – washed down with beer or wine. Nights were full of happy reflection on the day, or anxiety for tomorrow. In seven-person tents a mite too snug, I got an adequate 3-5 hours sleep. But doubts would surface. Was I just being tolerated, out of 13

politeness to my visual impairment? Was I giving enough back? Saying “thanks” a thousand times didn’t seem enough somehow. Yet every day would bring new delights, fresh company, a deeper feeling of companionship, and such thoughts would evaporate. In Casablanca, the visit to the Grand Mosque was the jewel in the crown, and Rick’s Café was an apt location for one trekker to enact her own romantic sub-plot. I treasure the photos we are sharing. I wish I could see them better but the huge smiles are a joy to behold. And then there’s my journal, which I can refer to if my vision expires before I do. With luck, the research we all did this trek for will cure or halt my condition. Whether that happens or not, as my vision fades these beautiful memories will not. __________________________________________________________________ Contact Michelle on 01280 821334 for details of future treks __________________________________________________________________

Breaking the News Tom Humphreys I was diagnosed in 1991. I had always had problems seeing at night. After a series of appointments at Sandwell Hospital, West Bromwich, Mr Gurney, my consultant, sat me down and asked what I did for a living. With half a dozen or so other white coats around us, I told him I was at university doing accounting and finance. "Don't pack it in just yet," he said. What the hell did that mean? As he and the white coats walked away, I grabbed the arm of one of them. What was going on? Obviously torn emotionally and worried about being left behind by the gang and Mr Gurney, he said, "Hasn't anyone told you?" He showed me the courtesy of sitting down, but then he wasn't going anywhere with the grip I had on his arm. I'd got something called Retinitis Pigmentosa, an inherited eye condition …, and just before disappearing he called a nurse to take me outside into the corridor. She plonked a tiny leaflet on RP in my hand. My head was in a spin, I'd just been told I had an eye condition? The nurse turned around as she was walking away - it was like tunnel vision. "Oh," I said, "but you don't actually go blind … do you?" "You can do," 14

she giggled, and I was left alone, holding the leaflet. I can still see the huge grin on her face. I still don't know to this day why she found it so amusing. The walk up the hill from the hospital back to the bus station was like climbing Everest. Everything was in slow motion. I can't remember how I told my parents. It wouldn't have mattered anyway. They still refuse to accept it even though I was registered blind in 2008. Nearly twenty years later, I still feel complete and utter contempt for those in the medical profession who keep everything a secret from the patient the condition affects. We are only the sum of our experiences.

RNIB Campaign Brings Parity of Mobility Allowance by Annis Lambert From 1st April 2011, people with severe sight problems can claim the higher rate mobility component of the Disability Living Allowance. A recent RNIB campaign lobbied Parliament on 15th October (1500 supporters) to obtain parity of mobility allowance for the blind and severely partially sighted. The government pays a high rate mobility allowance to disabled people to be used to pay for help in and outside the home. However, the blind are ineligible to claim the higher rate allowance. I got involved in the campaign because I am registered blind with RP and have a daughter who is an RNIB fundraiser. I wrote to my MP Philip Hollobone James Purnell, the Pensions Minister, and Jonathan Shaw, Minister for the Disabled, all of whom were behind the upgrade. My MP organized for us to attend Prime Ministerâ€™s question time on 15th October and, afterwards, met us for lunch before we joined the masse lobby. Then on 17th of March at the report stage of the welfare reform bill, Jonathan Shaw MP, announced that the government will make the changes we have been campaigning for. No vote needed! This will benefit many readers of this newsletter. I feel privileged to have played my part with my husband's ever present help and support. 15

Growth Factors – An Exciting Avenue of Research by Michel Michaelides BSc MD FRCOphth Moorfields Eye Hospital Preliminary findings have recently been published on a promising growth factor related treatment for vision loss caused by dry age-related macular degeneration. It is plausible that this treatment’s beneficial effects will also be observed in a parallel trial being conducted on people with Retinitis Pigmentosa. Retinitis pigmentosa (RP) represents a large group of inherited conditions that are caused by a diverse set of faulty genes. In RP these faulty genes lead to gradual loss of the light sensitive cells in the retina – rod and cone photoreceptors. This initially results in night blindness and a reduced field of vision and over time to severe visual impairment. There is currently no cure or effective treatment for most forms of RP. However, over that last 10 years through laboratory-based scientific research and now increasingly via clinical trials there is optimism that in the near future therapies will become available to slow the rate of progression and hopefully restore a degree of lost vision. What is especially pleasing is that these efforts are directed along several different avenues, including gene therapy, stem cell therapy, and nutritional and growth factor treatments, thereby increasing the chances of success. Preliminary findings have recently been published on a promising growth factor related treatment. Growth factors promote the health and function of cells and tissues in the body. They are made by the body to sustain and repair itself and have important roles in cell survival. Many research groups are investigating growth factors either when used alone, or in combination with other therapies, such as stem cell therapy, in the treatment of retinal diseases. One of the main growth factors that has received attention is CNTF – Ciliary Neurotrophic Factor – a substance that has a specific role in nourishing nerve cells, including those in the retina. CNTF has been shown to be successful in slowing retinal degeneration in animal models of RP. Human clinical trials have begun investigating the safety 16

and effectiveness of CNTF in people with RP, Usher Syndrome and Age-Related Macular Degeneration. Encapsulated cell therapy (ECT) refers to the insertion of a tiny device containing genetically modified retinal cells, which continually release the protein CNTF, directly into the eye (“ECT implant”; “NT-501”). The hope is that this growth factor will "rescue" photoreceptors (i.e. prevent their death) and reduce vision loss. Neurotech Pharmaceuticals is carrying out the clinical trials at 14 sites in the USA, with the final outcome expected to be published by the end of 2009. Preliminary data published recently on one of the groups of patients in this trial, those with dry age-related macular degeneration (the commonest cause of blindness in the developed world), have indicated there are currently no safety concerns and a significant slowing of the rate of visual loss has been observed. In this ongoing study, the high dose of NT501 stabilised vision at the 12month time point. It is plausible that this exciting reported beneficial effect on retinal photoreceptors will also be observed in the studies involving patients with RP. (ECT technology: Neurotech website)

Work is advancing on discovering new growth factors, on understanding how they influence retinal cells, their role in different retinal diseases and on developing methods for delivering growth factors to the eye. This may yet result in further new avenues for therapy.

branch news branch news branch news branch Branch News from our volunteers across the UK DEVON & CORNWALL BRANCH Julie Allen

DORSET BRANCH Hazel Hart

It was good to see everyone at our usual Christmas dinner haunt, and Spring saw a flurry of sponsored events, including the Exeter Half Marathon.

The hard work of fundraising all seemed worthwhile when Professor Andrew Lotery gave us a run-down of his scientific research work for RP at our March AGM. We were further inspired by Colin McArthur and his wife Linda, with their story of fundraising for RP over the years.

Richie Forbes took part to raise funds for research and completed the course. Although initially not under his own steam, this ploy led to his sponsors paying additional sums of money. So a special “thank you” to Richie for your fundraising efforts and all you’ve done for the profile of RP. With the rumoured long hot summer ahead, Mrs Gale’s cream tea afternoon is the perfect place to be on Sunday 19th July. Another date for your diary is the branch meeting on Saturday 10th October, with guest speakers and an opportunity to meet local members. Details of both events will appear in the local newsletter. If you have news for future articles, please contact me at joolsallen@hotmail.com 18

We have a number of fund raising events lined up, where you can meet other members. Several street and supermarket collections are planned. Please, please, spare even an hour to help out. (Contact Toby on 01202 744344 for east Dorset, and Graham on 01300 348851 for west Dorset). Also note Janet and Graham Keen’s Garden Party at their home in Piddletrenthide on Saturday 11th July. There will be a range of stalls, raffle and tombola, and cream tea in the garden. This is a really wellorganised, enjoyable afternoon, so do try and come along.

SOMERSET BRANCH Tom Graham This is the 25th year of the Somerset Branch. Mike and Averil Phillips started the branch and Mike was chairman for the the important first five years. Dorothy Killick took over as our second chairman, and last year indicated her wish to stand down in 2009. Her contribution to the branch has been immense over twenty years, as for many of those years, she acted as secretary, fundraiser, and event organiser, and her house was, and still is, the meetings venue. Russell Parsons was elected to replace Dorothy at this year's AGM. Russell is a longstanding member, and has previously served as chairman of Somerset Sight, formerly Somerset Association for the Blind. Branch contribution to the Research Fund was £4,000 in 2008, and so far this year, the collections are encouraging. SOUTH WALES BRANCH Marian Evans Another enjoyable and successful coffee morning was held at Carmarthen in April at which over

£600 was taken on behalf of RP. Everyone, helpers and participants alike, had a thoroughly good time. Our thanks to all who helped. Our Branch AGM to elect / re-elect Committee members will be held at Llangennech, Carms, on Sunday 26th July. Please contact Marian on 01554 821531 if you will be attending. On Sunday 27th September the “Stride for Sight” walk will take place on the lovely Llanelli Coastal Path. Why not ask family and friends to join in to help raise money for the RP Research Fund. Times, start and finishing points have yet to be confirmed. For information please contact Heulwen on 01994 484206. COVENTRY BRANCH Leigh Kelly We’re looking forward to our 30th anniversary celebrations on 27th June, with a dinner/dance at The Royal Court Hotel, Keresley, Coventry. Two of our founder members are still working tirelessly for RP, Richard Bartlam our Secretary and his wife Jean our Fundraising/Welfare Officer. 19

Edwina Millis joined the branch six months later and has been a committee member ever since. Our treasurer, Veronica Wood, was a bit of a late comer, only 21 years! Thanks to all four. Five recent store collections were a great success with the one in Morrison’s raising £522.97. Huge thanks goes to Rob Merry. He raised more than £400 for a 100-mile sponsored bike ride through the Warwickshire countryside, including a huge hill in the Cotswolds. EAST OF SCOTLAND BRANCH Jim McLean After many years of stalwart service to the branch, our treasurers, Jim and Rosemary Honeyman, have decided to call it a day. Many, many thanks for all your work. Last year, through their hands, the branch managed to send down to head office the princely sum of £6700. We now have a new treasurer, Laura Cluxton, who joined us last year. An application has gone to the BIG Lottery Fund to fund a project here in Edinburgh involving Prof Alan Wright, a 20

long-standing honorary branch member. We will do our bit to make the bid a successful one. Our next meetings are on 11th July at 2pm, and 7th November at 11am. HEAD OFFICE David Head In May, we were delighted to appoint a new Outreach Officer for which we successfully secured funding. Having a son with RP, Sue Drew has been volunteering for the charity for some time. We are looking forward to welcoming her in June. __________________________

In memory of… Our thoughts are with the family of Dr Keith Barnett, who passed away on Thursday 16th April. Keith was a grant-holder and we pay tribute to his valuable research work at the Animal Health Trust, Newmarket.

Our deepest sympathies go to the wife and family of Neil Robert Egerton, who died suddenly at the age of 48. We are grateful for the donations to RP Fighting Blindness in his memory.

Calling All Quiz Buffs We have the opportunity to put forward a quiz team for the BBC show "Eggheads" featuring Jeremy Vine and Dermot Murnaghan. If you have RP and are interested in taking part, please email or call the office. Let us have your contact details, and a note about your quizzing experience and any specialist subjects you can claim a good knowledge of. The prize varies but we could earn several thousand pounds to further our fight against RP, and of course if we were featured it would also raise general awareness of the condition with the public. If you are interested please call 01280 821334 or email david@brps.org.uk.

____________________________________________________________________

Trek to Everest Base Camp RP Fighting Blindness is joining up with Fighting Blindness Ireland for this chance-of-alifetime trek. Already we have four intrepid adventurers, who have committed to raising £4,500. They’re teaming up with 16 fellow walkers from across the Irish Sea. The trekkers are working hard on their fundraising. The £4,500 each trekker has to raise seems an

almost bigger mountain than the one they’re training to tackle. Creative initiatives include Jo Spiller’s advertising space in the form of a “base camp jigsaw” online (http://www.basecamporbust.info)

which she’s selling piece by piece to local businesses.

She’s also held a “base camp ceilidh”, which raised almost £800, taking her over the £2000 mark. Other trekker initiatives include giving lessons, portrait photographs, a stand for kids at the Highland Games in Nethy 21

Bridge, a kids sports weekend and lots more. To help the trekkers (Lauren Carter, Jo Spiller, Steve Cunningham, Liz Cassidy) reach their targets read their stories at: www.justgiving.com/lauren2everest09 www.justgiving.com/jospiller; www.justgiving.com/stevencunningham

www.justgiving.com/lizcassidy And we still have two more places! If you would like to take up in this fantastic opportunity call us now on 01280 821334!

Midlands Aquathlon in Aid of Eyes for Life This exciting fundraiser for RP Fighting Blindness by Kenilworth Junior Team is planned for Saturday 13th September and will take place at Abbey Fields Swimming Pool, Bridge Street in Kenilworth. There are five categories from ages 8 up to 16 years, featuring a swim (50-100m) and a run (1000m). Entrants are organised in teams of four and managed by a parent team manager.

Join in the fun, which includes a fun swim, short tennis, bowls, face painting, balloon race, and lots more in the park area. The outdoor swimming pool will be open and available for use during waiting times. All entrants receive a medal goodie bag and T-shirt. The event is sponsored by Kenilworth Lions Club, Warwick District Council. Funds raised are in aid of Eyes for Life and will be donated to RP Fighting Blindness. Each team can set up a Just Giving site via www.brps.org.uk, where you can also find the entry form. Or you can ask for a BRPS sponsor form. The closing date for entries (ÂŁ3.50) is 1st September. Contact: Jacqueline Hobson, ja.hobson@hotmail.co.uk, tel 07766 101925, or Bev Hollingsworth, bev.hollingsworth@btinternet.com, tel 07779 035170.

Cooking for VIPs - Buy a Book We mentioned Lynda Cantor’s “My Vision of Hope” in the Spring newsletter. Proceeds from sales will go to RP Fighting Blindness. This month we highlight a cookery book “Cooking for VIPs”, sales of which will also generate donations. Written by Stargardts sufferer Maxine Turkington, this excellent book contains over 120 recipes graded according to complexity, plus hints and tips for a visually impaired person organising and using a kitchen. Produced in large print format, and printed on high quality sealed paper for long life, this 160 page book is available for £12.95 plus £2.50 packaging & handling to anywhere in the world. To order, please complete the form and send it with your cheque to: RP Fighting Blindness, PO Box 350, Buckingham, MK18 1GZ. An author donation of £3.88 is given per book sold. _________________________________________________________ Order form

Please send me ....... copies of "Cookery for VIPs" by Maxine Turkington. I enclose a cheque for £15.45 per copy payable to "Maxine Turkington" and I understand my book(s) will be delivered within 21 days.

Full Name

____

Address Postcode Signature

_____ Email

Tel _____ 23

news snippets news snippets news snippets ne A reminder that you can access all news and documents on our website http://www.brps.org.uk. The password for the Members’ Area is “retina”.

The winner of the Spring issue crossword competition is Mr Robin Dearing from Yorkshire who wins a £75 holiday voucher.

Funds of £2.5 million are available from Thames Water Trust for people in the Thames area facing hardship and difficulty in meeting their water charges. Tel 0845 456 6863 or write to Thames Water Trust Fund, Freepost RSAJ-BXEA-LKLT, Sutton Coldfield, B72 1TJ. If you need more information about the driving license regulations visit www.dvla.gov.uk or www.direct.gov.uk/motoring. The RP Helpline can also provide guidance. Call 0845 123 2354 The Trustees of RP Fighting Blindness would like all members to be fully aware of our plans over the next few years. The full Strategic Plan 2009 - 2013 is therefore readily available for download from the members' area of our website. If you would like to comment please email david@brps.org.uk at any time. Don’t forget the “Stride for Sight” on 26th and 27th September 2009. A list of walks around the UK will be given on our website, so look up the one nearest to you. Get outdoors with friends and help us raise money for the Research Fund. Details: www.brps.org.uk. Sponsor our intrepid Everest Trekkers and read their stories here. Lauren Carter www.justgiving.com/lauren2everest09 Jo Spiller www.justgiving.com/jospiller; www.basecamporbust.info Steven Cunningham www.justgiving.com/stevencunningham Liz Cassidy www.justgiving.com/lizcassidy

Crossword Solution No. 4 (Spring 2009) N A T I O N O E V T B R A C E R L T R A E V I C T E D S M I E T E A M L E M U O R B S N W A P D F I S S U R E A I N R T A C I T

C U B I T U L A A B B I T S E N S I D L E L K L N O O N I M Z O G G I N S H N A T R O O Z E U S O D E S S A

calendar dates calendar dates calendar dates Sight Village Exhibition takes place th from 14 -16th July at Queen Alexandra College in Birmingham. This 3-day event showcases technology, support and services for people who are blind or visually impaired. See: www.qac.ac.uk/sightvillage British Police Symphony Orchestra and Denise Leigh will be performing a prestigious

fundraising concert for us on Friday 30th October at the Butterworth Hall, Warwick Arts Centre. Stride for Sight Weekend is 26th and 27th September. Details on p24. The Membersâ€™ Conference and AGM will be Cardiff at the Millennium Stadium on 20th June (details already above). Next yearâ€™s Conference will take place in London on 19th June 2010. 25

Crossword Puzzle No. 5 (Summer 2009) 1

CD player a new crossword for this edition.

7 8

10 12

15 18 22

16 20

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

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

24 25

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

WIN an Alba Portable

Postcode: ................... Closing date is 31 July

------------------------------------------------------------------------------------------------Across 28. Implies (6) 1 & 9. Cliff Richardâ€™s seasonal break (6,7) Down 4. Volunteer (5) 1. Sofa (6) 8. Shy and reserved (5) 2. Pregnant lady (3,2,2) 9. See 1a 3. Ratifies (8) 10. A boost to oneâ€™s own self esteem 4. Greasy (4) (3,4) 5. Creamy sweet (5) 11. Young girl found in Bethlehem (4) 6. Drumbeat (6) 12. Amber is made from this (3) 7. Sailing vessels (5) 14. Fair (4) 13. Greek god of the sea (8) 15. Type of cereal (4) 16. Dark syrup (7) 18. Bath (3) 17. Very small flat (6) 21. Resounding (4) 19. Put brain into disarray (5) 23. 8ft part of the pool (4,3) 20. German sportswear and 25. __ mouth, Louis Armstrong (7) equipment manufacturer (6) 26. Chopped up into cubes (5) 22. Place to stay (5) 27. Flower from Holland (5) 24. Piece of meat (4) 26

Carole Holmes MBE We reported in our last newsletter that one of our volunteers, Carole Holmes, was awarded an MBE in the New Year’s Honours List for long-standing services to the visually impaired. Carole works for RP Fighting Blindness and other charities. Carole is pictured below at her investiture in March.

received an MBE for his tireless commitment to his community despite losing his sight 10 years ago. John is founder of the Corra Charity Bike Riders, and chairman of Priory Road Tenants and Residents' Association, helping to bring major benefits to his area. He said, “Meeting the Queen, and the two hours at Buckingham Palace is a time I will never forget. From start to finish, the organisation at the Palace was first class, and in particular the personal care and attention I received as a blind person, was excellent.”

John Holt MBE Campaigner, fundraiser and BRPS member John Holt also _________________________________________________________________________________________

CDs to Replace Audio Tapes With audio cassettes becoming obsolete, from the Autumn onwards, we will be issuing the audio version of the Newsletter on CD rather than cassette. CDs offer more flexibility and can be played in computers, hi-fi systems, and often DVD and Daisy players too. Standard CD players are available from about £13 upwards in Argos for example or you may qualify for one designed for someone with visual impairment to be provided on free loan from The British Wireless for the Blind Fund (tel 01622 754757). This scheme is administered through most of the county associations for the blind. If you have any questions or problems with the transfer to this more up to date format, please let us know by telephoning the office on 01280 821334 or emailing david@brps.org.uk and we will do our best to help. 27

RP Fighting Blindness (BRPS) Invites You to Run and Raise Money to Fight Blindness. RP Fighting Blindness (BRPS) is inviting people to join “TEAM RP” in this year’s Sony Ericsson Run to the Beat. BRPS is supported by Sony Ericsson Run to the Beat and has been nominated as one of the official charities. There is still plenty of time to take part in the half-marathon event which starts and finishes at the O2, joining thousands of runners of varying standards, celebrities, and phenomenal competitors who have overcome illness or injury to take part. The event sees scientifically selected music played around the course to boost your performance.

For more information and to be part of “TEAM RP” contact Michelle Carter on 01280 821334 or michelle@brps.org.uk by 1st July 2009 . __________________________________________________________________

ASICS The British 10k London Run 12th July 2009 The ASICS British 10K London Run attracts runners from all over the world, including some of the sport's finest athletes. The 2008 race was won for the second consecutive time by the Olympic men’s marathon champion Stefano Baldini. The race also attracts many celebrity runners from TV and film, running for charities of their choice. People from all walks of life and every level of running ability choose to run the ASICS British 10K London Run, and all help to make the day into the great event it has become! Team RP has 30 places and you can be part of the Team by pledging to raise a minimum of £300. Help raise much needed funds for continued research into a cure for RP. Register at www.runtofightblindness.org.uk or call Michelle on 01280 821334. 28