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British Retinitis Pigmentosa Society

Winter Newsletter: Issue 133

● Letter from our Founder ● More on Argus II implant ● US Gene Therapy Success ● Fundraising around the UK ● Marathons, treks, walks ● How to get involved ● Patient info DVD launched

Keep helping! Renew your Membership now for 2010! 1

Everest Base Camp The front cover shows the group that trekked to Everest Base Camp in late autumn to raise research funds. Fourteen trekkers from Fighting Blindness Ireland and four from RP Fighting Blindness made the two week trek, with the highest point being around 5,600m (18,372 feet). The scenery was not the only humbling aspect. Gerry Behan (Ireland) and Stevie Cunningham (UK) at the front of the cover picture made a formidable team over the toughest terrain. Both showed determination, concentration and great humour, even at the toughest of moments, the former guiding systematically using his voice and Stevie (who is registered blind) following behind, consistently without a false step. Others showed equally steely will, overcoming altitude sickness, gastric problems and fatigue to get to Base Camp and back down. It was a trip full of camaraderie and mutual support, and that’s why we all made it. The colours, sights, sounds and smells(!) of the Himalayas will undoubtedly remain imprinted on all of us. The inspirational physical strength and boundless patience of the Sherpas is something you meet rarely in life. On this trip, you reached your own personal highest point (the breathtaking panoramas made you feel lucky to be alive). At times you also reached your lowest, but the “craic” and larks always brought you back up. It was a truly memorable experience (even if we might forget porridge and tatties for a while!). Tribute to those who took part and those who supported, including the UK trekkers, Stevie, Jo Spiller, Lauren Carter and Liz Cassidy, and heartfelt thanks to Fighting Blindness Ireland, especially Clodagh and Bernice, for organising it. Liz, the Editor 2

Contents Letter from the Chief Executive

Letter from Lynda Cantor

New Appointments to the Medical Advisory Board ..

Guide Dog Owners Lead Life-Changing Campaign

Stakeholder Liaison Group – Inside View

Membership Renewals

Calendar Dates

Research News: UK and International

DVD “Living With RP”

Fundraising

Crossword Solution No. 6

Branch News ..

Crossword Puzzle No. 7 (Winter 2009) ..

Goods and Services

Renew Your Membership of RP Fighting Blindness

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

Letter from the Chief Executive Dear Members This is my third Christmas at RP Fighting Blind-ness and, as I remember saying last year, doesn’t time fly? 2009 has been a tough year for us. The country has been going through its worst recession for decades and nearly all charities have suffered reduced incomes. We’ve been able to maintain our income levels, but unfortunately not increase them in the way we would have liked. Despite this, we have maintained our research grant commitment and anticipate increasing this again further next year, so a big well done and thank you is already due to our fundraisers and members. Our early planning for 2010 assumes a degree of financial recovery for the country from the middle of the year and of course there will be more about this in our annual report. In the last few weeks we have received 6 new requests for grant

funding from researchers from institutions in the UK and Europe. Our Trustees and Medical Advisory Board will be making decisions about these in January, but I wanted you all to know that demand for funding is increasing, a great indicator that innovation in RP research continues. Lastly, a note about our Information and Support service, which has been significantly enhanced this quarter with the launch of our new patient information film (on DVD and online) called “Living With RP”. This is a brilliant resource, especially for people newly diagnosed, and I cannot thank the people involved in its production enough. Do take a look at the article about this on page 17. Have a great Christmas and New Year and here’s to even further progress in 2010. Kind regards David Head MBA Chief Executive

View the CEO David Head’s blog for an alternative version of what’s going on at http://brpsnews.wordpress.com. Or check out our Facebook group at http://tinyurl.com/retpig . 4

Thank you! from Lynda Cantor MBE, Hon. President, RP Fighting Blindness Dear Members, I would like to take this opportunity to wish you all a very Merry Christmas and a joyful New Year. I realise that this year will have been a tough one for many of our members and I want to thank you for all the support that has been shown to the charity throughout 2009. We are very grateful to the many fundraisers and volunteers who have worked hard to ensure that vital funds are directed to research into RP. Thank you also to the Information & Support team, and their excellent support to those facing the challenges of the condition, in particular the newly-diagnosed. It is important to remember that there are still young people being diagnosed with RP each week. I was recently reminded of this at the concert at Warwick Arts Centre, where a beautiful young girl called Emmy, who is 7 and has RP, presented the musicians with a bouquet of flowers. The charity plays an important role in making sure that families like Emmyâ€™s receive the right information and support at an early stage. It also reminds us how we still need to focus and make sure that we increase the money going to RP research. I know that many of our members give very generously at this time of year and we are extremely grateful for this. The economic times have been hard for us all and if you are able to encourage friends, family and colleagues also to contribute to our efforts then it would be very much appreciated. The office team in Buckingham would love to hear from you and can help with fundraising ideas and initiatives. Once again, thank you for your support this year and wishing you all the best for the festive season and a prosperous 2010. Lynda 5

Stakeholder Liaison Group – Inside View by Liz Illingworth Liz Illingworth volunteered for the Stakeholder Liaison Group, partly motivated by a family history of RP, and also through a wish to find out more about some interesting research on rhodopsin RP. My father was diagnosed with RP in 1984 aged 63, and I was diagnosed a few months later - aged 33! My grandfather almost certainly had RP, but he died too young for it to develop past the night blindness stage. Dad and I have the dominant type of RP. No one else in my immediate family has RP and I don’t have children, so I’ve taken little interest in news about gene therapy and other research - so often for recessive RP types. Then I read that the Big Lottery Fund (BLF) was funding research into potential treatments for rhodopsin RP – a dominant form. I volunteered for the project’s Stakeholder Liaison Group (SLG) out of curiosity but also on behalf of my Dad. He died two years ago. He’d been a keen photographer of wild orchids and butterflies and he was angry that RP eventually robbed him of his great passion. At the first meeting in London, attending from the Institute of Ophthalmology were the project leader, Professor Mike Cheetham; Caroline McCulley, the post-doctoral research worker assigned to the project; Dimitra Athanasiou, a PhD student at the Institute and, later in the meeting, Professor Tony Moore. David Head and Stephen Jones were there from RP Fighting Blindness as were eight members with RP. Stephen described how he and Mike had applied to the Big Lottery Fund and in September 2008 were awarded £247,000 over 3 years. Quite a coup – because RP Fighting Blindness is one of only 5 medical research charities to be successful in that round of bids. BLF is keen that patients are actively involved in projects funded – so the SLG was formed. Then the rest of the meeting was taken up with getting to grips with the research aspects. We were reminded that in RP, blindness is eventually caused by the progressive death of rod and cone cells in the retina. The 6

first symptom is decreased night vision followed, later, by tunnel vision. Mike explained that inherited mutations in rhodopsin, the light sensing protein of rod cells, are the most common cause of dominant RP. Usually helper proteins remove the mutated rhodopsin, but if this doesn’t happen it forms clumps of aggregated material, similar to those found in other neurodegenerative diseases, like Alzheimer’s and Parkinson’s disease. In dominant RP these clumps cause the rod cells to die – leading then to damage to cone cells, which then affects daylight vision. Previous research has shown that several classes of existing drugs can reduce the toxic effects of the mutant rhodopsin. Mike and his team believe that some of these drugs can be developed to delay or prevent blindness in RP patients. In order to test this theory the project will experiment on mice and rats that have been bred to have RP. The efficacy of each drug will be tested by looking at changes in retinal cells and their function, then comparing the results with untreated animals. The SLG will meet three times a year. Our main role will be to communicate progress to our wider membership and other RP patients, and plan a future open day at the Institute. It is an exciting project and everyone involved seems very positive about the outcomes. However readers need to be clear that this research is not promising a cure for RP. By slowing down the death of rod cells, so that the cone cells last longer, it would mean that patients have night blindness – rather than full-blown RP. I would settle for that and I think my Dad would have too. Liz Illingworth _________________________________________________________________________________________

The government’s recent Green Paper, “Shaping the Future of Care Together” proposes abolishing Attendance Allowance (AA) and putting the money saved into the general social care pot. The RNIB sought your views to input to its official response to the consultation. You can view the RNIB response at www.rnib.org.uk. Alternatively, call the RNIB Campaign Hotline on 020 7391 2123 for more news. 7

New Appointments to the Medical Advisory Board Following Professor Dutton's decision to step down from our Medical Advisory Board (MAB) earlier this year we are pleased to confirm that Dr Susan Downes and Professor Paul Hiscott have joined the RP Fighting Blindness MAB. David Head, Chief Executive, said "This continues what seems to be becoming a tradition of the charity successfully securing the help of the very best ophthalmologists in the UK. We are really pleased that the MAB is being strengthened in this way and grateful to Susan and Paul for their support." Earlier in the year, Professor Gordon Dutton had stepped down from the MAB due to other work commitments. Our thanks go to him for all his work on behalf of RP Fighting Blindness. Dr Downes is a Consultant Ophthalmologist at Oxford Eye Hospital and a highly respected specialist with a particular interest in retinal dystrophy. Professor Hiscott is Professor and Hon Clinical Consultant in Ophthalmic Pathology at the University of Liverpool. The charity's MAB make recommendations to the Trustees as to the validity and potential of proposed research projects and accept the reports of our researchers on the Trustees' behalf. __________________________________________________________________

Membersâ€™ Conference 2009 In our report on the Membersâ€™ Conference in the Autumn Newsletter we omitted to mention our two session Chairpersons. Carole Holmes introduced a very interesting Information & Support session and in the last session Professor John Marshall did his usual excellent job in chairing the medical research plenary and answering questions from the delegates afterwards. Our thanks go to both of you and apologies for missing out your respective contributions in the report. 8

Guide Dog Owners Lead Life-Changing Campaign Guide Dogs Scotland Guide dog owners, in a number of areas of the UK, are leading a campaign to promote the impact that these wonderful dogs have on the lives of blind and partially sighted people. The North West, Scotland, South West, Herts, Beds, Essex and North & East London have been chosen by The Guide Dogs for the Blind Association for a project to show how guide dogs can provide freedom, independence, confidence and companionship to people with sight loss. Visually impaired Steve Cross – guide dog Nimmo – explains: “Finding Nimmo has changed my life. A guide dog can offer a unique, safe and effective way of getting about independently. You don’t need to have lost all your sight or be formally registered as blind or partially-sighted.” There’s no upper age limit – many people over 70 have become successful guide dog owners. It costs just 50p to have a guide dog, with all essential equipment and training provided by The Guide Dogs for the Blind Association, including vet bills and dog food if people wish. Steve, who has no peripheral vision due to the eye condition Retinitis Pigmentosa (RP) says: “Before my guide dog Nimmo, the biggest challenge was how I would cope walking down a crowded street. However, two years after finding Nimmo – thanks to Guide Dogs – I have been able to develop my confidence and independence. “Nimmo has turned my life around; we travel together by train, and I’ve now got the confidence to pursue hobbies, including blind bowling, rock climbing and white water rafting. I encourage anyone with sight loss, who lives in their pilot areas, to contact Guide Dogs. Get in touch!” Contact 0845 372 7499 or email guidedogs@guidedogs.org.uk 9

Membership Renewals Apart from those members who have joined the charity in the last 6 months, the vast majority of our members have subscriptions which are due on January 1st 2010. It would be really helpful for us if you could arrange payment of your subscription as soon as possible, as this avoids the charity incurring the postage and administrative costs involved in chasing payments. Also, please bear in mind that membership income is absolutely critical to allow us to continue our work, as it contributes significantly to the office overheads and means that more of the donations we receive during the year can go to provide services and research grants, to the benefit of every member. For queries contact us at info@brps.org.uk or call 01280 821334. Your membership renewal form is in the back of this Newsletter.

calendar dates calendar dates calendar d 16th Retina International World Congress, Stresa, Italy, 2010

Stephen Jones, Retina International Representative

The 16th RI World Congress will take place at Stresa in the beautiful scenery of Lake Maggiore in the north of Italy,

situated to the north-west of Milan. The hosts of the event are Retina Italia. The title of the congress is “Changing our Vision – Bridging the Gap from the Lab to the Patients” and the public sessions of the congress will take place over the weekend of Saturday 26th and Sunday 27th June, 2010. The business sessions, which are only attended by the official delegates, will take place from 23rd to 25th June. 10

It is already possible to register for the event and book accommodation, details are on the Retina Italia website at http://www.retinaitalia.org. The congress fee is 150 Euros if paid before 31st March 2010 and will be 180 Euros after that date. The accommodation form lists 12 different hotels with a wide range of costs per night. Details of the programme and speakers have not yet been released.

Chester, picking up in Manchester, Birmingham and other places yet to be arranged. Eurotunnel crossing. Overnight stay in France with dinner, bed and breakfast. ●Wednesday 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. ●Tuesday 29th June Start homeward journey. Overnight stay in France with dinner, bed and breakfast.

We hope that many members of RP Fighting Blindness will make the trip to Stresa and we know that members who have attended previous conferences have found the experience very worthwhile. Members can make their own arrangements to travel to Stresa or they may be interested in the opportunity described below.

●Wednesday 30th June Arrival in UK Total Cost: £635 pp twin/double rooms. £725 single rooms Contact Details: Telephone Beryl on 01244 680463 or email jamesduggan@talktalk.net

Coach Trip Option One of our members, Beryl Duggan, plans to organise a coach trip to the Congress. The details supplied by Beryl are set out below. Please note that all arrangements and costs are subject to confirmation.

Beryl said “I will need to have at least 40 people who are interested before this holiday can be definitely confirmed so please contact me by 31st December. If you need accommodation in Chester before travelling, I can arrange that for you too. I do hope you will join me to make this fantastic holiday possible.”

●Tuesday 22nd June 2010 Executive coach with air conditioning, toilet, plus hot and cold drink facilities departs 11

Retinal Awareness Group Annual Weekend April 2010 Nicole Woodin The Retinal Awareness Group (RAG) will hold its annual Blackpool Weekend from Friday 16th to Sunday 18th April 2010.

facilities for guide dogs are close by. Exhibitions and the formal sessions start from noon on the Friday and there will be evening entertainment provided. There will also be quiet spaces for chatting.

Our aim remains to provide information and advice about living and coping today with Inherited Retinal Dystrophies like RP, Usher Syndrome and others.

Full board and tea and coffee (dinner on Friday through to lunch on Sunday (packed for travellers)) costs per person:

Professor Tony Moore, from Moorfields Eye Hospital, will explain the eye conditions, update us on research and answer your questions. Sport for the visually impaired will be explored along with recent changes to benefits and employment opportunities, emotional issues, and campaigns to promote audio description for TV, theatre and museums. We’ll also split into groups for RP sufferers and their supporters to discuss individual concerns.

Double or twin room Single room Single occupancy in double or twin room

£125 £135 £145

For further information please telephone me on 0207 794 9502 or send an SAE to Mrs Nicole Woodin, 17c Downside Crescent, Belsize Park, London, NW3 2AN. Alternative contacts are Carole Holmes (01253 404194) or Howard (h.j.leicester@city.ac.uk).

We have exclusive use of the hotel and modern accessible facilities including for wheelchairs.

To book please contact the hotel directly, stating "RAG Weekend":

All presentations will be amplified and a hearing loop system and sign language interpreters will be available in the main conference room. A grass area and other

Carousel Hotel, 663 New South Promenade, Blackpool, FY4 1RN. Tel. 01253 402 642). Best to book during the day. 12

●11 July Running: The Asics British London 10k www.thebritish10klondon.co.uk

Events 2010 ●31 January Challenge Raffle Draw www.brps.org.uk

●5 September Running: The Adidas Women’s 5k Challenge. www.womenschallenge.co.uk

●14 March Running: The Adidas Half Marathon, Silverstone. www.brps.org.uk

●5 September The Great British Duck Race.

●25 April Running: The Virgin London Marathon www.london-marathon.co.uk

www.thegreatbritishduckrace.co.uk

●31 May Running: The Bupa 10k London Run www.brps.org.uk

●11 - 22 September Challenge RP Event Project Namibia www.trektofightblindness.org.uk

●19 June Members Conference, London, including National Raffle Draw. www.brps.org.uk

●25-26 September Stride for Sight www.brps.org.uk

__________________________________________________________________ Crossword Solution No. 6 (Autumn 2009) R A T T Y I O E S P A R K A A O N R N F L A I L E D F D I S M O O N C G U T O O Z E O P O H W P O R C I N E E R S R R I O T S 13

S T I N K P N N P O S T L E T E E E L A L I N S U G L I I O S B S C U R E A N P N I G H T C E E F E R R E T

Research News: UK and International Blind Manchester patients regain some sight in 'bionic eye' trial Source: Manchester Royal Eye Hospital More news on retinal implants. We have already reported in previous issues on work at Moorfields Eye Hospital on ongoing clinical trials of the Argus II electronic retinal implant. This press release from Manchester Royal Eye Hospital gives an update on progress in relation to three individuals fitted with the device. Eye surgeons at Manchester Royal Eye Hospital have hailed their revolutionary ‘bionic eye’ trial on three of their Manchester patients a success after each of them regained some sight as a result of their treatment, with one patient being able to identify letters on a computer monitor and read some short words. The surgery was carried out by Mr Paulo Stanga, a Consultant Ophthalmologist and Vitreoretinal Surgeon at the Manchester Royal Eye Hospital and Reader in Ophthalmology at The University of Manchester and Manchester Biomedical Research Centre, and his team. This effort is part of a pioneering international trial of the artificial retina, which is intended to help some blind people regain a degree of vision. The Manchester patients are three of only 32 people worldwide, under the care of 11 different consultants across the globe, to participate in the trial to date. These blind patients with the Argus II retinal prosthesis were presented with powerpoint large white letters on a black screen computer monitor. One of the Manchester patients, who became blind due to advanced retinitis pigmentosa – an inherited and degenerative disease of the retina – had an intraocular electronic retinal prosthesis fitted on 3rd June 2009. He has been blind for much of his life, but can now identify some of these large print short words from a monitor. Using Argus II technology, developed by Second Sight® Medical Products, Inc. (Sylmar, CA, USA) the implant aims to restore a basic 14

level of useful vision, in the form of spots of light and shades of light and dark, to people with very severe retinitis pigmentosa. The technology consists of a tiny camera and transmitter mounted in a pair of glasses. “The patients are progressing much faster than we at first thought,” said Mr Stanga. He also said that the third patient in the trial is also experiencing limited letter recognition. “These results, combined with those of the other 29 patients, have made for a successful trial”. __________________________________________________________________________________________________________

International: Philadelphia Trial ‘Restores Significant Vision’ Source: Foundation Fighting Blindness A gene therapy trial has restored significant vision to twelve people with Leber’s Congenital Amaurosis. The youngest patients showed the most significant improvement. The work was led by Drs Albert Maguire, Katherine High and Jean Bennett. Gene therapy has taken another major step forward as a treatment for retinal diseases. Researchers conducting the landmark gene therapy clinical trial at The Children’s Hospital of Philadelphia (CHOP) have reported that 12 people with Leber’s Congenital Amaurosis (LCA) have now been successfully treated and are experiencing sustained, and in many cases significant, improvement in their vision. Over the past 18 months, the CHOP researchers have treated nine individuals, ranging in age from 8 to 44. Just two weeks following treatment, all of the patients reported improved vision in dimly lit environments. Since treatment, each of these participants has demonstrated improvements in visual acuity, peripheral vision, and light sensitivity in the treated eye. LCA is a form of retinitis pigmentosa that can cause blindness or severe vision loss at birth. Patients involved in the trial have LCA2, a form of the disease caused by a defect in a gene called RPE65. Treatment involved injecting a normal version of the gene into one - their worstseeing - eye. 15

The most dramatic vision improvements occurred in the youngest patients, whose retinal degeneration was less advanced than that of older participants. All four children in the study, ages 8 to 11 when treated, demonstrated a significantly improved ability to navigate an obstacle course after treatment. “Children who were treated with gene therapy are now able to walk and play just like any normally sighted child,” said Albert M. Maguire, M.D., a lead investigator in the trial. “They can also carry out classroom activities without visual aids.” The youngest patient, Corey Haas, who was treated 13 months ago and is now 9 years old, has shown the greatest improvement. While his vision is not perfect, his visual acuity is vastly improved and his field of vision is now comparable to that of someone with normal vision. On the other end of the age spectrum, the oldest patient, a 44 year old woman, has also experienced remarkable improvement in her vision. She can now walk down the street, unassisted, to meet her children after school. Past studies indicate that improved vision may last for many years to come; dogs that received gene therapy treatment over nine years ago continue to maintain their vision today. Stephen Rose, Ph.D., chief research officer at Foundation Fighting Blindness said, “The success of this groundbreaking effort is paving the way to use gene therapy to treat a wide range of retinal degenerative diseases. For the full story see http://www.blindness.org

In relation to the work above, we note one scientific view of its wider implications for other forms of inherited blindness, from the Netherlands. “What are the challenges for our society to make optimum use of these new technologies? Inherited forms of blindness, from a geneticist’s 16

perspective, show a challenging spectrum of genetic causes. Depending on the clinical subtypes of inherited blindness, about 5090% of the causal genes have been identified … the real challenge will be to translate this enormous scientific knowledge into clinical practice, because even in the developed world less than 10% of patients with inherited blindness know their genetic defect. Though the costs to identify the underlying mutations are not excessive, in most cases they are not covered in health insurances. “…The study by Maguire and coworkers will further boost gene therapy trials and provide hope for patients with inherited blindness and other genetic disorders. As novel therapeutic strategies are being developed for each of the separate genetic defects, ascertaining and genotyping the corresponding patients will be the real challenge in the coming decade.” (Frans P M Cremers, Rob W J Collin, Department of Human Genetics, Nijmegen Centre for Molecular Life Sciences, and Department of Ophthalmology, Radboud University, Nijmegen, Netherlands) Source: The Lancet (Nov 2009) __________________________________________________________________

DVD “Living With RP” Our new DVD film “Living With RP” was launched at an event at the House of Commons in November, with the support of Buckingham MP, Speaker John Bercow. The film is about 50 minutes long and explores various issues faced by people with RP, including work, driving, family planning, mobility, social support, and much more. We would welcome your feedback. You can watch the video on our website or we can send you a copy. Please email or call the office (contact details on page 3). 17

fund raising fund raising fund raising fun from our volunteers across the UK London Marathon Nine own place runners took to the streets of London in 2009 to cover the 26 miles raising money for RP. Andy Hale (pictured) was one of the nine and with generous sponsorship raised a fantastic total of ÂŁ2,493. On the 5th year in succession of applying for a place in the London Marathon, the organisers finally called my bluff and gave me one. I had been inspired by my sister in law, Vanessa Hale, who ran the marathon to raise money for RP Fighting Blindness in 2004. Our mother, Valerie, has had RP for about 10 years. Before her diagnosis we, like so many others, were completely unaware of its existence. I ran (walked some might say) the marathon in 4 hours 27 minutes, the high point (apart from the finish line) being given a bag of jelly babies at the 18th mile, the low point being overtaken by Batman and Robin at the 22nd mile. The most important aspect of my first marathon is that it has provided me with an opportunity to raise funds for RP Fighting Blindness, whilst at the same time enabling me to inform a large number of friends and colleagues of both the RP condition, and the work undertaken by RP Fighting Blindness.

And Another Steely Runnerâ€Ś Richie Forbes took part in the Exeter Half Marathon run and raised ÂŁ351.10. The photo shows Richie halfway around the course.

Canter for Sight

Thirty-four runners formed Team Canter for Sight and ran the Kings Head Canter, a 5K race from Chiddingly to East Hoathly, on August Bank Holiday Monday, in support of RP Fighting Blindness. The team was assembled, for the second consecutive year, by David Bradford, from Winterbourne Close, Lewes. David, 27, suffers from the degenerative eyesight condition retinitis pigmentosa, which is the most common cause of blindness among the working population of the UK. The team is well on its way to raising its target sum of £2,000. First across the line for the team was David’s brother, Matt, in 17mins 21secs, in seventh place overall. Team Canter for Sight was generously sponsored by Harveys Brewery, RUN shop (Hove) and Lewes Athletics Club – with 36 pints of Harveys Best bitter to be awarded to the team’s fastest novice. To donate, go to www.justgiving.com/canterforsight09

Stride for Sight Great weather, good spirits and valiant fundraising efforts made for a fun and successful series of sponsored walks by our branches around the UK. Here are some impressions of the day. On the last weekend of September a dozen of our branches up and down the country took part in "Stride for Sight", a nationally coordinated series of sponsored walks to raise money for our research 19

fund. From the Forth Road Bridge to the Embankment in London, via Northern Ireland and many others, dozens of members, their families and friends turned out to help, many of them collecting whilst on the walks too. A five-figure sum has been raised, a great result all round. Pictured left are the Essex and Suffolk Branch participants. Steve Carrington of the branch reported a great turnout, perfect weather and high spirits. They raised £2,700. Steve hopes to see some new faces next year. “I am glad that this has now become a National event, and thanks to Colin and Linda McArthur for your original idea”.

In Belfast, local U105 radio presenter George Jones launched the walk with his usual good humour, joining the group for part of the 10k route along the Towpath of the river Lagan. Bernadette Armstrong of the branch said, “It was a great morning full of stories and good ‘craic’ with a celebratory lunch afterwards. The total amount raised for the walk was over £5,200. Special thanks are due to Joe McClean of RBS Ulster Bank, who strode 30km and was sponsored by work and colleagues for a magnificent £1200.” In the Yorkshire and Humberside area, branch members and supporters raised £1,180 for their walk over the Humber Bridge, and 20

Jim McLean, branch secretary in the East of Scotland, reports not only a very successful fundraising stride across the Forth Road (pictured) Bridge but also “plenty of laughs” despite the high winds! In Hampshire, branch secretary Steve Harris reported absolutely perfect weather. It was lunch in the pub; then the 5-mile return walk along the promenade starting at Hill Head and taking in the views to the Isle of Wight. “Most of the sponsorship was for my 6-year old grandson, Oliver. It was a long walk for him, but he did it in style. So, well done, Oliver, and many thanks for helping us to raise a total of £365”. In Dorset, the sun again blazed as the sponsored walkers sweltered their way along the seafront – a welcome excuse for an ice cream! Hazel Hart reports; “It was a great success, creating much interest among the general public”. Over £1,500 was raised. In Wales, twelve members took to Llanelli’s Coastal Park, with kind weather and lovely views. Marian Evans of the branch sends her thanks to “our intrepid dozen”. Contact Michelle at the office if you can help us by organising a walk in your local area in September 2010 (contact details are on page 3).

Cat's Eyes Colin McArthur, one of our members and a trustee who suffers from RP, took the helm of new Wightlink 260-seater catamaran as part of an awareness and fundraising campaign to support sight-saving research at Southampton hospital. In an amazing feat, Colin took the controls of the Wightlink catamaran between Ryde, Isle of Wight and Portsmouth (both ways), well-known for being amongst the busiest shipping lanes in the world. This was the start of a campaign to support researchers at Southampton hospital. Led by Prof Lotery (pictured), they are investigating how tissue taken from the front of the eye can be used to isolate stem cells which may ultimately be regrown in the retina to restore sight. David Head, Chief Executive at the charity said. “We know our members will be excited by the potential of the science Andrew Lotery is taking forward. We want to invest further in this particular laboratory and the launch of this fundraising campaign will help us do this”. To donate to the campaign, see www.justgiving.com/catseyes or send a cheque to the office payable to RP Fighting Blindness (S’ton Appeal)

Iron John UK! This is definitely an energetic one and really something only for those worth their mettle (sorry, the pun will dawn in a minute). John Rizzo-Naudi took part in the Iron Man UK competition on 2 August, completing the challenge in 13 hours 50 minutes of swimming, cycling and running. Pretty amazing given that he covered 140.6 miles in the time! He raised over £1,800 in sponsorship. Really well done John and major thanks from us all! 22

Feedback from the Summer Raffle. We heard from Shirley and friend, satisfied winners of one of the prizes, a weekend in the Park Hotel courtesy of Kris and Bryn Jones. They raved about the food and the fantastic welcome, as well as the great beaches (and that was only the second prize!). The 2010 raffle will be launched soon

Everest Base Camp Trek Mammoth Fundraising Jo Spiller and Liz Cassidy not only supported each other in reaching their respective targets (£4,500 each) for taking part in the Everest Base Camp Trek last month (see page 2) but also secured a mammoth amount of material and fundraising support from family and friends. The two trekkers raised jointly £14,000. Extra special thanks go to Jo’s Mum for the pudding party; Mary Findlay, her helpers and the musicians for “Ceilidh for a Cure”; Liz’s cousins and siblings for sponsored walks, cycles, car boot sales and sponsored sports event; local businesses that bought Jo’s internet ad space; Steve Paterson for donating one of his bronze masterpieces; La Britannique for facilitating a lucrative raffle; and Aileen Christie for approaching the NHS Retirement Fellowship (Dundee Branch) to make a donation to the charity (the Fellowship kindly donated £300). Beyond the generous donations of family; those of work colleagues and friends were equally magnanimous. Overwhelming! Thanks – that was team work!!! _________________________________________________________________ If you would like to propose contributions to the winter newsletter, the deadline for submitting them is 10 February. Please send them to us at: info@brps.org.uk. New internet platform facilitates access for visually impaired persons. The World Intellectual Property Organisation (WIPO) has launched a new platform, designed to enhance access to information and cultural contents for visually impaired persons (VIPs). The new Internet portal has been named Vision IP. http://www.visionip.org/portal/en/ 23

branch news branch news branch news b from our volunteers across the UK ESSEX & SUFFOLK Steve Carrington

successful Stride for Sight event: Over £1,500 was raised.

Can I start with a big thank you to Margaret and Ted Newson for the fantastic, well organised Stride for Sight event in September. The turnout was great. Thanks to all who showed up. Nearly £2,700 has been raised so far from sponsorship money & donations. (See the fundraising pages above).

Our 2010 AGM will take place on Saturday 6th March 2010 with two great speakers lined up. Then on Saturday 20th March there will be an Auction of Promises in aid of both RP Fighting Blindness and Dorset and Somerset Air Ambulance in Stalbridge, Dorset. We would love to see you at either event!

Happy Christmas and a very special New Year in 2010. Hope to see some new faces joining in next year raising those all important funds for research.

We are all looking forward to the Christmas meal – this year turkey wins over coffee and cake. Festive greetings! Contact hazel@elefloat.com.

Contact scarrington40@yahoo.com.

EAST OF SCOTLAND Jim McLean

DORSET Hazel Hart

At our final meeting this year, we had two eminent medical guests and old friends of the branch, Dr Kevin Chalmers and Prof Alan Wright from the Medical Research Council Human Genetics Unit at the Western General in Edinburgh. They are heavily involved in research into RP on our behalf. Amongst other things,

We have had a good summer of fundraising. Thanks to everyone who helped at or organised an event. The heavens opened on the day of the summer fete, hence the village hall wet weather contingency plan. Everyone enjoyed themselves and spent their money all the same. By contrast, the sun blazed for our 24

they conveyed some very exciting news about the gene therapy trials in the Children’s Hospital of Philadelphia. (The US Fighting Blindness report is reproduced on page 15 above .. ed)

YORKSHIRE David Stevens Yorkshire Branch AGM for 2010 will be held on April 17th, but not in Leeds. We are moving the venue. I will write to all members when we have a new venue so please look out for it. We would like to see as many members there as possible.

The meeting was very well attended, with prospective new members pledging to get involved alongside the stalwarts. Pam Munro of Guide Dogs for the Blind gave an educational talk, allaying fears about who can qualify for a dog. Some were worried that an existing pet dog would exclude entitlement to a guide dog - not true.

Our "Stride for Sight Walk" was at the Humber Bridge on Sept.26th. We had about 12 walkers. It was a great sunny day, with a picnic first and then the walk. I would like to thank all of you very much for your time and effort. To date almost £1,200 has been raised.

Fundraising so far this year has gone very well, with a substantial amount in the 1000’s gathered and more fundraising planned.

At the AGM 2010, we will decide what to do for next year to get more members involved in the day. Please consider joining in or sponsoring someone doing the walk – thanks!

Kevin and Alan were asked when the state could be expected to chip in for the research. “When we prove the techniques work” was the reply. So it’s up to us to keep the money flowing in. It means so much.

Contact David Stevens on 01482 856040 or tarran56@yahoo.com.

Finally our very own Stevie ‘Sherpa’ Cunningham is back from Everest Base Camp, and we’re really looking forward to hearing all about it. (Well done, that man!)

DEVON & CORNWALL Julie Allen Despite the weather, Mrs Gales’ Cream Tea in July was a success once again, raising £1,050. Richie Forbes’ raised £351 in the Exeter Half Marathon run and thanks also go to all of you who

jimuckmclean@blueyonder.co.uk

have donated/raised money over the past year by giving a collecting can a home, collecting stamps, contributing to raffles at events, participating/organising a street/store collection, as well as all the other imaginative ways which have raised much needed funds for research into RP.

our guest speaker. For details please contact Heulwen Howells on 01994 484206. Two events to look forward to in early 2010 are our usual Coffee Morning on Saturday February 13th at Carmarthen Day Centre. Also in 2010 Ruth Newman of Swansea has volunteered to represent us in the London Marathon.

Unfortunately, the planned October meeting had to be cancelled, which will make our Christmas lunch on Saturday 12th December all the more of a social occasion. We are delighted that Professor John Marshall and his wife will be joining us in the Victorian Suite at our usual venue.

Other RP Wales dates for your diaries for 2010 are as follows: ●Sunday April 4th: meeting in Neath ●Sunday July 4th: Branch AGM in Carmarthen. ●Sunday Dec 12th: Christmas Lunch (venue to be confirmed).

Merry Christmas and a Happy New Year to all. Contact: joolsallen@hotmail.com

Merry Christmas and a Happy New Year!

SOUTH WALES Marian Evans

FROM HEAD OFFICE David Head

In September, twelve of our branch members took part in Stride for Sight. Please send sponsorship collections to our branch treasurer Jacqueline Evans (Tel 01554 820825).

Kevin Johnson stood down as Branch Liaison Officer recently, because of time commitments at work and also his desire to invest his time for the charity in the successful North-West branch.

Christmas is almost upon us. This year’s lunch will be held on December 13th at ‘The Ivy Bush Hotel’ in Carmarthen when Sarah Rochira of RNIB Cymru will be

We are very grateful to Kevin for his support over the last couple of years in this post. Ted Dwyer, a member who has a son with RP, 26

will take over with this being ratified at the next AGM (June 2010). Welcome Ted and thanks for volunteering to help us further.

weekend at the Whitecliff Bay Holiday Park on the island in September. Finally, a date for your new 2010 diaries is Saturday 17th April, when we hold our next meeting. More details later. In the meantime, Seasons Greetings to all members and to everyone at the office.

Branch Chairs also recently agreed to a name change for the Midlands branch. It is now renamed ‘Heart of England’ branch to better reflect the area covered.

Contact emazze@hotmail.co.uk.

HAMPSHIRE Steve Harris Saturday 26th September was warm and sunny, absolutely perfect for our Stride for Sight (again, see fundraising pages above … ed).

In memory of…

Gladys Wells was a remarkable lady, and a staunch member of the Dorset branch, who we will all miss. She passed away in August 2009 at the age of 93. Over the years, Gladys raised over £8,000 for RP Fighting Blindness, and also raised funds for other charities.

We have now completed our street collection season, and managed to raise a total of nearly £5,500 from seven events. Many thanks to everyone who has turned out to help, and we hope that you will all be able to come along and shake the cans again next year. Many thanks also to Maureen Nickless who raised a wonderful £1,150 from a skittles evening in the Newbury area.

She loved poetry and letter writing, was involved in the Girl Guide movement for years, and held an impressive collection of dolls – evident at her coffee mornings.

Congratulations go to Colin of the Isle of Wight group for his sailing feat – he took the helm of the Bembridge lifeboat and, though blind, successfully steered a course as part of a fundraising

Gladys was an inspiration to us all. 27

goods and services goods and services Tempting New Holiday Destinations from ‘Traveleyes’ for 2010! Traveleyes offers exciting holidays that should interest our readers Traveleyes founder and director Amar Latif became blind in his early twenties due to RP. The company offers specialized, world holidays for both visually impaired and sighted travellers to exciting destinations. The emphasis is, as they put it, “…wonderful, multi-sensory travel experiences through unique, hand-made holidays, at off-the-peg prices”. The offers are open to individuals or those travelling together with friends or partners, and they travel as part of a small, cohesive group. They include adventure holidays, relaxing break or cultural expeditions. They have new series of holidays for the first half of 2010 Egypt Nile cruise, a skiing holiday, Cape Town, the Croatian coast and more. For information see www.traveleyes-international.com or call 08448 040221. __________________________________________________________________________________________________________

RP Christmas Card Stickers Why not order some of these stickers to attach to your Christmas cards? For every sticker you’ll be donating a few pence to the research fund. These have been an enormous success in previous years. A batch of 100 costs just £5 and you can order from Gill Eastwood (01923 773073 or gilly5@tesco.net) or by using the form on the back page of this issue of your Newsletter. __________________________________________________________________________________________________________

Crossword Puzzle No. 7 (Winter 2009) 1

voucher from Waitrose.

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

11 12

18 22

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

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

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

24 25

WIN a shopping

Closing date: Monday 4th January 2010

------------------------------------------------------------------------------------------------Across Down 1. Large fruits (6) 1. Russian city (6) 4. He flies the plane (5) 2. Cannot go any further (7) 8. Oil reservoirs (5) 3. Holes in the nose (8) 9. Twisting round and over (7) 4. In poverty (4) 10. Canadian city (7) 5. Denise, soprano with RP (5) 11. Injured by a bullet (4) 6. Hosiery (6) 12. Fruit seed (3) 7. Type of ship (5) 14. Hero (4) 13. Heaven, Nirvana (8) 15. Military force (4) 16. Assassinations (7) 18. __ Fox, glamour model (3) 17. Charges in (6) 21. Dull pain (4) 19. Worn or threadbare (5) 23. A clue not like this one (7) 20. Tickles (6) 25. Sliding through the air (7) 22. 17 syllable poem (5) 26. Concepts, thoughts (5) 24. Piece of jewellery (4) 27. Injured by a bee! (5) 28. Survey (6)

www.waitrose.com

Our thanks go to Waitrose Stores in Buckingham, for providing a ÂŁ20 voucher for the prize crossword on page 29. Thank you Waitrose!

Merry Christmas and a Happy New Year from all of us here, staff and volunteers, at RP Fighting Blindness!

RP Fighting Blindness (BRPS) is a registered charity, number 271729 Now please renew your membership for 2010 See page 32

ÂŠ www.cartoonstock.com 30

Membership of RP Fighting Blindness Apart from those members that have joined the charity in the last 6 months, the vast majority of our members have subscriptions which are due on January 1st 2010. Please help us by making payment of your subscription as soon as possible, as this helps with cash flow and saves us time and resources. Please remember that membership income is critical to allow us to continue our work, as it contributes significantly to the office overheads and means that more of the donations we receive during the year can be used to provide services and research grants. The subscription from 1st January 2010 is £20. If you are able to make an additional contribution this will of course be very welcome indeed. Please complete and return the form overleaf to renew your membership. Please send this to the office at "Membership Subscriptions, RP Fighting Blindness, PO Box 350, Buckingham, MK18 1GZ". Thank you for your continued support. Standing Order: If you usually pay from your bank account, please contact your bank before Christmas and ask them to ensure the January 1st payment is amended to a minimum of £20. The amount paid by Standing Order is entirely under your authority and we cannot change this for you, so please let them know as soon as possible. Cheque: If you usually pay by cheque, this should be for a minimum of £20 and made payable to "RP Fighting Blindness". If you could send this before the end of December this would be very helpful to us. Credit/Debit Card: You can make a card payment for your subscription online, though unfortunately we do not yet have the facility to take a payment by telephone. To do this, please visit our website www.brps.org.uk and click on the "Pay My 2010 Subscription" link in the yellow box on the right hand side of the page. You will have the option to make a payment of any amount, the minimum is £20. This payment is processed securely by Paypal, a respected internet payment provider. We are not sent your card details.

Membership Renewal Form 2010

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

________________

____

I pay by standing order and I have asked my bank to amend the payment due.

I enclose a cheque payable to RP Fighting Blindness. (see below)

I have made a payment online using my credit/debit card.

I am a UK taxpayer; please claim gift aid on this subscription (and any donations I make) on my behalf.

Membership subscription ___________________________ £ 20 _ Additional donation ________________________________£___ __ Christmas Card Stickers (see page 28) ________________ £__ ___ Total Enclosed___________________________________£__ ___

Please tear off or photocopy and send this form to the office at: RP Fighting Blindness Membership Renewal 2010 PO Box 350 Buckingham MK18 1GZ 32