Look Forward issue 139 - Summer 2011

British Retinitis Pigmentosa Society

Summer Newsletter 2011: Issue 139

● Research Round-Up ● Annual Conference ● Marathon Success ● Members’ Articles ● Events Programme ● and lots more … …

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ULY 16TH

Contents Letter from the Chief Executive

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Research News and Round-Up

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Member Article: Pakistan Experience

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Member Article: Finding Out About Filters Branch News

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Annual RP Conference

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Patient Information Day

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Snippets

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The ‘Hardest Hit’ March

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Board Changes

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Fundraising Stories

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Fundraising Challenges

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Summer Fun Puzzle

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Music for Sight “Visions of England”

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Events Calendar

About RP Fighting Blindness We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. The RP Helpline number is 0845 123 2354 or email helpline@brps.org.uk.

PO Box 350 Buckingham MK18 1GZ

Tel: 01280 821334 Email: info@brps.org.uk

Charity No. 271729

This magazine is available as a pdf and on audio CD as well as this print version. Call or email the office if you would prefer another format.

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Letter from the Chief Executive David Head MBA Dear Members Manchester - watch for announcements about those dates.

Welcome to your Summer RP Fighting Blindness magazine.

I’d like to make a personal appeal to those of you in the Midlands. It is so important that you support our fundraising events; we must make them succeed if we are to continue providing support services and funding all-important RP research. Please book tickets for our classical concert in Birmingham on 16 July. Once again the orchestra are giving their time and talent free, so help us give them a good audience and let’s make a spectacular success of the evening and the fundraising.

This last quarter has been great for RP research news, as those of you who are online and get our email bulletins will know.

There have been announcements about stem cell progress, gene therapy, retinal implants, growth factors, and optogenetics, all in a very short space of time. We have included a summary of some of the advances in this magazine but I would encourage you to sign up to the monthly email if you can.

We’ve also put together a summer events programme, starting with our main RP Conference, then a patient information day in Oxford and a fundraising concert in Birmingham, both in July. These events are all featured in this issue. Later in the year we have two further information days planned - in London and

Enjoy this edition of your magazine. I hope to see many of you at the conference on 25 June.

Have a great summer!

David Head, Chief Executive

Magazine Item For Us? If you have an article or story for the magazine please send it to us by email to info@brps.org.uk. Photos need to be high resolution for printing and the deadline is August 10th.

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research news research news research n Safety Approval for First Commercial Therapy for Retinitis Pigmentosa In a landmark announcement, US based company Second Sight Inc announced in March that they have secured CE approval for the Argus II retinal implant. The device, which has been trialled in the UK at Moorfields and Manchester Eye Hospitals, is designed to replace lost retinal function with an electronic device implanted in the eye and linked to an external camera mounted on a pair of spectacles.

The device has been in development for some years, undergoing vigorous testing, and has proven successful at providing a degree of visual perception to people totally blinded by retinitis pigmentosa (RP).

The device does not provide ‘pictures’ in the true sense of the word but stimulates the retina in such a way that users have been able to complete simple navigation tasks and gain a degree of independence.

The CE marking is mandatory for many products sold in Europe and certifies that a product has met safety, health, legal and environmental requirements. A manufacturer must have its product examined by an independent body prior to applying the CE Mark, which now allows Second Sight to make the Argus II commercially available in Europe including in the UK. In its press release the company said: “Argus II is Second Sight’s second generation implantable device intended to treat profoundly blind people suffering from degenerative 4

diseases such as RP. The system works by converting video images captured from a miniature camera, housed in the patient’s glasses, into a series of small electrical pulses that are transmitted wirelessly to an array of electrodes on the retina. These pulses then stimulate the retina’s remaining cells resulting in the corresponding perception of patterns of light in the brain. Patients learn to interpret these visual patterns thereby gaining some functional vision.

“Thirty patients participated in clinical trials, using the device at home and in their daily lives since the trial started. Although the resulting vision is far from normal … after more than 3 years of clinical trials, we were happy to demonstrate the performance, safety and long-term reliability of Argus II. Dr Lyndon da Cruz, Consultant Retinal Surgeon at Moorfields Eye Hospital in London added “The fact that nearly all had a stable, safe and functioning system and that a majority of patients could recognize large letters, locate the position of objects and the best could read short words impressed us beyond our most optimistic expectations".

Prof. Marshall of our Medical Advisory Board said "This is an embryonic technology that has a potentially promising future that hopefully one day will bring the same ability to overcome a visual impairment that cochlear implants have given to those with severe hearing defects." He went on to warn though that the marking, though very welcome and a significant step, “is not a measure of clinical effectiveness, only safety”.

We have been following the development of retinal implants with great interest, with focus on Second Sight and similar technology from Retina Implant AG in Germany, which is shortly to enter clinical trials in Oxford.

David Head, Chief Executive, said “The approval is significant and we congratulate Second Sight. It’s a step closer to commercially available treatment, and obviously we are delighted. The next steps will be very interesting as Second Sight seek to make their product available in the UK and other European markets, and we also anticipate further technical advances over the next couple or three years.”

It is important to note that these devices offer hope to people who have lost their sight, they are not suitable for partially sighted people.

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New Medicines Risks and Benefits – Who Should Weigh Them Up? “We are looking for up to 16 individuals, to form a diverse jury that will deliberate a very important issue - the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!”

The Genetic Alliance UK and University of Glamorgan are recruiting for a new research project. It deals with weighing the risks and benefits of new medicines and treatments.

For more information about the project and getting involved see the Genetic Alliance UK website, www.geneticalliance.org. uk, where you can register your interest. Or if you prefer, simply contact Julian Walker on julian@geneticalliance.org.uk

Genetic Alliance UK is looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. Julian Walker describes the project.

Research Round-Up Over this last quarter there have been several news stories in the mainstream and scientific press about the progress of various threads of research. Here we briefly round them up; more information is also available in the research section of our website.

Gene Therapy Always an interesting area, as it is one of the most promising and advanced lines of research and one that we have supported for several years. In April Prof.

Robin Ali from the Institute of Ophthalmology presented to our Retinal Awareness Group (RAG) weekend in Blackpool and brought the audience up to date with progress. Prof. Ali explained how gene replacement therapy for Lebers' Congenital Amaurosis (LCA) is now being trialled at much higher doses than previously, and in children as young as 5 years 6

old. He also highlighted some of the genes that are likely to be the subject of the next rounds of clinical trials and appeared to be optimistic about the potential benefits as the technology involved is being refined and enhanced as trials progress.

At about the same time as Prof. Ali’s presentation, separately we learnt that in the USA the FDA have given approval for clinical trials of a gene therapy for Stargardts Disease, a form of RP. Similar work using a different viral vector to deliver the gene is also progressing at Oxford Eye Hospital (see our later item about patient information day in July).

Also in the USA REGENX BioSciences, a privately held biopharma company and developer of NAV, a unique gene delivery technology, has announced a $2.8 million grant from the US National Institute of Health which will support the advancement of NAV technology to treat X-Linked RP for which there is currently no treatment. Kenneth Mills, CEO at REGENX said "We ... recognize the critical importance of accelerating early stage development into meaningful treatments ‌ NAV technology is attractive because of its unique ability to safely and effectively deliver genetic material to target cells in the eye".

Stem Cells Prof. Ali also discussed recent progress on the use of stem cells to generate photoreceptors suitable for transplantation into the retinae of people with RP. Though anxious to point out that clinical trials of such treatment are some way off, he was optimistic about recent progress, including news from Japan where a respected research group have succeeded in generating mouse photoreceptor cells using stem cells.

Created by coaxing mouse stem cells into a precise three-dimensional assembly, the 'retina in a dish' is by far and away the most complex biological tissue engineered yet, scientists say. "There's nothing like it," said Prof. Ali (who was not involved in the study). "When I received the manuscript, I was stunned, I really was. I never thought I'd see the day where you have recapitulation of development in a dish."

If the technique can be adapted to human cells and proved safe for transplantation it could offer a supply of tissue to replace damaged retinas. However this could still take many years, though more 7

immediately synthetic retinal tissue could help researchers in the study of RP and in identifying therapies.

David Head, Chief Executive at RP Fighting Blindness welcomed the news, saying "The prospect of replacing failed retinal cells is really exciting, and this is a crucial and significant step in that direction.

"The last three or four years have brought some fantastic developments in retinal research. What these research groups achieve is amazing and they deserve accolade."

NB: For those with internet access, a recording of Prof. Ali’s presentation can be downloaded for a small donation from www.brps.org.uk Optogenetics Optogenetics can bypass damaged photoreceptors by genetically engineering other types of cells to respond to light. This is done by by adding genes that code for proteins called channelrhodopsins, which normally sit in the photoreceptor cell membrane.

Several research groups have been exploring the possibilities of optogenetics. Prof. Alan Horsager’s (USC Institute for Genetic Medicine) recent work has been focused on making retinal bipolar cells sensitive to light and in a new study in mice the team have induced enough sensitivity in the retina of blind mice and restored enough vision that the mice can navigate a maze.

"It’s a very targeted approach that maintains the natural processing of the retina,” said Horsager (pictured). “There is a lot more to understand and preclinical studies are the next step to determine the potential therapeutic benefit for humans.”

Prof. Tony Moore at UCL Institute of Ophthalmology and a member of the RP Fighting Blindness Medical Advisory board welcomed the news, though added "we must stress that this work is in its infancy and is at the stage of work in animal models, but may be applicable to human disease in future."

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Growth Factors American company Neurotech, whose work on the use of Encapsulated Cell Technology to deliver growth factors to the retina has been featured in our news stories from time to time over the last 3 years, have announced “statistically significant cone photoreceptor preservation in patients with retinitis pigmentosa” as a result of clinical trials of their product NT-501. NT-501 is an intraocular implant that consists of human cells genetically modified to secrete ciliary neurotropic factor (CNTF), a growth factor capable of rescuing and protecting dying photoreceptors.

The study utilized Adaptive Optics Scanning Laser Ophthalmoscopy (AOSLO), a new diagnostic technology, to measure the rate of degeneration of cone cells.

The trial, which the company acknowledge involved only a very small number of patients, was led

by Prof. Jacque Duncan at the University of California. He said, "We are extremely encouraged by the photoreceptor preserving effect of NT-501 in this study as well as the usefulness of AOSLO as a diagnostic tool. Larger studies are urgently needed to confirm the photoreceptor protective effect of NT-501 treatment in patients with RP." As RP research advances and more announcements are made, you may like to be kept up to date more often than through this quarterly Magazine. You can do this online by visiting the ‘Research News’ section of our website www.brps.org.uk .

You can also keep up to date by signing up for our electronic bulletins which are sent at the beginning of each month (except months in which this magazine is produced). To do this please visit the ‘Contact Us’ section of the website.

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Member Article: Pakistan Experience Clare Gillespie Clare gives an account of her interaction with a teenager in Pakistan.

(Reproduced with permission of The Royal College of Ophthalmologists) Iqbal lives in the remote village of Machulo, which lies at 3,000m in the Hushe valley in Baltistan, in the far north of Pakistan – a stone’s throw from some of the highest mountains in the world. Life there is harsh, education is limited and gender equality restricted.

I met Iqbal when he was 13, in 2008, following a climbing expedition. I noticed immediately that he had problems with the bright light and I gave him my glacier glasses; the relief was instantaneous. Sadly, as is the way with teenagers, the glasses didn’t last forever. In 2010 I returned to Machulo, this time to help in the village schools.

I took with me an illuminated magnifying glass which I hoped would help – I had sent out a vision test earlier to determine the strength of lens required.

It was an instant hit. In my five weeks in the village, Iqbal became my shadow and I saw at first hand the difficulties in his daily life. I decided to see what help I could get for him on my return to the UK – to get a diagnosis at least.

The Royal College of Ophthalmologists in London put me in contact with two excellent ophthalmic specialists in Islamabad and Lahore.

With the unstinting help of a couple of village men and the generous assistance of our expedition agent, we got Iqbal and Uncle Hussain down to Islamabad for an appointment with Professor Imtiaz. The serious work could begin.

Professor Imtiaz Ali, Islamabad, recounts his examination of Iqbal and the problem of RP in Pakistan.

Iqbal was sent to me by Clare Gillespie and when I saw this boy last year his visual acuity was CF (‘counting finger’) in both eyes. He had a left 10

divergent squint of 21 degrees and he had nystagmus which was pendular in nature. On mydriatic examination, he was found to have a very severe retinitis pigmentosa. There was nothing that I could do for him except to offer supportive treatment. I provided him with myopic spectacle correction, which helped him see a little better and made him happier.

The disease of retinitis pigmentosa is rampant in Pakistan because of consanguineous marriages. There is lots of molecular research going on to eliminate this disease but unfortunately progress is slow. Thousands of families are suffering from this disease which is accompanied by (other conditions such as) posterior sub-capsular cataract, vitreous abnormalities, high myopia and nystagmus.

There is a special need for genetic counselling to tell families the danger of marrying within the family. I hope the Royal College of Ophthalmologists will be able to set up a taskforce comprising ophthalmologists from Pakistan and UK to join hands in eliminating this disease.

Pakistan Foundation Fighting Blindness We have links with The Pakistan Foundation Fighting Blindness – formerly known as the Pakistan Retinitis Pigmentosa Society – through our membership of Retina International which links some 40 RP organisations from around the world.

PFFB was founded in 1988 and is led by Chief Executive Officer Saima Ammar (pictured), who lost her eyesight completely at the age of 2 when her optic nerves were damaged due to high fever. The foundation has established a research programme and, like RP Fighting Blindness in the UK, also provides support services to people with RP. PFFB have a website at www.pffb.org.pk

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goods services goods services goods se Finding Out About Filters Anthony Parker Anthony, one of our members, describes his experiences and insights into filters for glasses ‌ It has been my experience that the only way to find out about filters is by trial and error. I hope others might not make the same mistakes that I have!

People with RP need to filter the light entering their eyes in order to eliminate, as far as possible, ultra-violet light and the visible light at the blue end of the spectrum. Doing this reduces the amount of damage which bright light does to the retina and reduces glare. Many patients report that this improves contrast, so giving a sharper image.

Whichever type of filter one adopts, it is also useful to wear either a visor, a peaked cap or a wide-brimmed hat to prevent direct sunlight or direct light from overhead reaching the eye.

For those of us who have to wear prescription glasses, there are at least four methods of combining filters with ordinary spectacles. Each has its advantages and disadvantages. The factors which we have to take into account are weight, effectiveness in blocking light entering from above and at the sides of the lenses, ease of taking on and off when moving from a light area to a darker one or vice versa, comfort and cost.

The simplest and lightest solution is to wear prescription glasses which incorporate filters. Those available from Medi View Ltd have been described in earlier issues of this magazine. They are however only available in a very limited range of strengths, need to be changed each time the wearer’s prescription is altered and are relatively expensive.

Alternatively, flip-up clip-on filters clip on to conventional glasses and can be raised out of the line of sight when not in use. However they 12

provide no protection from light entering from above or from the sides and some types may not even be large enough to cover completely the prescription glasses to which they are attached.

Several ranges of shields are available from Optima Low Vision Services Ltd, some of which are designed to fit over conventional glasses. I have found that such shields do not necessarily fit comfortably over every shape of frame and buyers should try to check this before placing an order.

Finally, there are back hanger filters which fit behind conventional glasses. They are lightweight and give good protection from light entering from the side. However, they have a tendency to fall out if the wearer stoops down and they are only available in a very limited range of strengths.

It would be of great help to people with RP if samples of these various types of filter were more readily available in Low Vision Clinics etc. to enable us to try them on before deciding which suits us best.

Suppliers (please note that RP Fighting Blindness does not endorse any particular supplier, this information is provided for information only) Medi View Ltd, Tel: 020 8933 7914, 20 Longcrofte Road, Edgeware Email: info@mediviewspecs.co.uk.

Optima Low Vision Services Ltd, Tel: 01803 864218, Email: sales@optimalowvision.co.uk Last Call Runners who are tempted to take part in this year’s ING New York Marathon on Sunday 6 November need to contact the office by Friday 24 June.

In return for a commitment to raise a minimum sponsorship participants will secure a place on this world-famous event, including accommodation and flights.

To discuss taking part please contact Michelle on 01280 821334 13

branch news branch news branch news b from our volunteers across the UK Hampshire Steve Harris

We do need some extra help to shake the cans, so if there is any way that you could come along please call us on 023 8047 6894.

We held our AGM on Saturday 16 April, once again at our very pleasant venue in Winchester.

Another date for your diary is Saturday 24 September, when we hold our Stride for Sight. We have chosen to walk from Hill Head to Lee-on-the-Solent and back again, simply because it is such a pleasant walk. We'll add more details in the next issue.

We had three special speakers to come and join us. In the morning we were very pleased to welcome Sue Drew, who gave us a very enjoyable talk about her work on the RP Outreach Project. It was made clear just how important this work has become.

www.brps.org.uk/hampshire

In the afternoon we were equally pleased to welcome Professors Mike Cheetham and Alison Hardcastle, who proved to be an informal and interesting double act, talking about their genetic research work at the Institute of Ophthalmology.

Devon & Cornwall Julie Allen It was good to see so many members at our dinner back in December; many thanks to Sue Drew for joining us as well as telling us a little bit about her outreach work. Thanks must also go to her daughter, who acted as her emergency stand in driver all the way from Cambridge. Our Christmas Raffle raised ÂŁ101.

It was very understandable and encouraging, especially to those of us with X-linked RP. We completed the meeting by selecting the winning tickets in our Prize Draw, which made a pleasing profit of just over ÂŁ600.

One of our members, Clare Gillespie, is involved with an RP project in Pakistan. Her article is reproduced with permission of The Royal College of Ophthalmologists on page 10 of this magazine.

We will be holding collections at the Hedge End Retail Park on 16 July, in Bitterne on 3 September, and in Romsey on 1 October.

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Devon and Cornwall RPers can contact the branch by emailing me at joolsallen@hotmail.com.

 In Memory  Pauline Fraser

by Arthur Chatters and organised the very enjoyable Christmas lunches. She helped Stewart when he became Branch Secretary, and then took over as Secretary when he became Chairman, despite the difficulties caused by her deteriorating sight and other health problems.

In February, members of Avon Branch were greatly saddened by the death of Pauline Fraser, who had been an active member of the branch for many years and, most recently, was our Branch Secretary.

She had RP herself, and showed great empathy for anyone else who experienced the trauma of diagnosis and the difficulties caused by failing sight.

It was typical that, although unable to take part herself, she was present at our Stride for Sight last September, with a collecting box ready to attract the attention of passers-by. She will be greatly missed and difficult to replace in the branch, and all our sympathy goes out to Stewart and their family and friends.

Pauline had been involved in branch affairs as far back as I can remember, and when she married Stewart in 1992 he also got involved. They did more than their fair share of holding collecting boxes outside supermarkets, and became members of the branch committee.

Condolences also go to Stewart from David and the team at Head Office

Pauline sent in our contributions to "News from the Branches" 15

RP Fighting Blindness Annual Conference Friends’ House, Euston, London Saturday 25 June 2011 We are pleased to invite all members and non-members of the charity to our annual conference this year.

The conference includes the ‘business session’ which is the formal AGM of the charity, at which the Trustees will present their Report and Accounts for 2010, and members will hear from the Trustees and Chief Executive. Members please regard this as formal notification of the charity’s AGM this year.

The remainder of the day is an opportunity to hear from speakers on Usher Syndrome, Disability Living Allowance and benefit changes, and of course from medical speakers. We will also present several awards, there is an exhibition all day, and our annual prize raffle will be drawn.

The day is informal and very social as well as informative. The event is free of charge though non-members are kindly asked to consider making a donation on the day to help with venue and catering costs. Please contact the office to confirm your attendance to help with our planning.

Programme The provisional programme is as follows, but please note that this is subject to last minute alterations.

10:00 - Event opens, exhibition open, tea and coffee available 11:30 - Conference Welcome by David Head, Chief Executive 16

11:35 - Plenary Session 1: The RP Fighting Blindness AGM Chair: Sir Alan Rudge The business matters of the charity including reports from the Treasurer, Chief Executive, and Trustees. There are no elections this year. Resolutions to approve the Annual Report & Accounts* and re-appoint our auditors will be put to members. Please note that non-members are not able to vote.

12:30 - Lunch available in the cafe and local sandwich bars and pubs.

13:25 - Plenary Session 2: Living With RP Speaker: Denise Maguire, University Lecturer in Law DLA and RP; Dealing with Change Speaker: Molly Watt, Sense Deafblind Young Person 2010.

RP and Usher; The Importance of Positivity A Question and Answer session follows each speaker.

14:30 - Plenary Session 3: The RP Awards The John George Award for Volunteering RP Fundraiser of the Year Lynda Cantor Founder Award for the Future of the Charity 15:00 - Tea & Coffee break, and Annual Prize Draw 15:30 - Plenary Session 4: Medical Research Chair: Prof. John Marshall Speaker: Mr Tim Jackson Mr Jackson is an Honorary Consultant Ophthalmic Surgeon at King’s College Hospital and a HEFCE Senior Clinical Lecturer at King’s College London. He is actively involved in the introduction of pioneering new treatments such as epimacular brachytherapy, stereotactic radiosurgery, and retinal implants.

His interest in RP relates to the Retina AG implant, designed to provide artificial vision to people with RP. A Question and Answer session will follow.

16:40 - Chairman's Closing Remarks 16:45 - Event close * Copies of the Annual Report & Accounts 2010 are available on request from the office or by downloading from our website www.brps.org.uk.

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RP Research Patient Information Day Oxford Eye Hospital Wednesday 6 July 2011 In collaboration with Retina Implant AG and Prof. Robert Maclaren, we have arranged an exciting information day for RP patients to be held at Oxford Eye Hospital in early July.

The session will cover a wide range of subjects and research threads, including the use of retinal implants, gene therapy, stem cells, and much more.

You can secure places at the event by emailing or telephoning the office (info@brps.org.uk or 01280 821334). It is important to note that places are strictly limited to just 100 so it will only be possible to join the event by booking in advance.

The event is free of charge.

Programme Please note that this is a provisional programme and thus subject to amendment.

1.45 pm: Please arrive in time to be seated 2:00 pm: Introduction and Welcome 2:10 pm: Electronic Retina in RP, Dr Markus Groppe 2:30 pm: Gene Replacement Therapy for RP, Prof. Robert Maclaren 3:00 pm: Stem Cell Treatments for RP, Mandeep Singh 3:20 pm: Optobionic Approaches for RP, Dr Sam de Silva 3:40 pm: Identifying the Genes Causing RP, Dr Susie Downes 4:00 pm: Sleep and Circadian Biology in RP, Dr Russell Foster (TBC) 4:30 pm: A patient experience, patient speaker 4:40 pm: Panel discussion, questions and answers 5:00 pm: Drinks reception and networking 6:00 pm: Close Prof. Robert Maclaren Consultant Surgeon and Professor of Ophthalmology Oxford Eye Hospital 18

RAG Weekend April 2011

RP Pin Badges

Over 100 people took part in our annual Retinal Awareness Group (RAG) weekend in April

Enamelled metal pin badges with the eye motif and RP logo are available from the office

This event took place in Blackpool and included speakers on over a dozen topics, including superb updates on medical research from Prof Robin Ali (Institute of Ophthalmology) and Greg Cosendai (Second Sight).

You can order badges online by following the link from our home page www.brps.org.uk or through the post by sending a cheque for ÂŁ1.50 per badge to the office, which includes postage.

The RAG weekend is hugely social as it takes place over three days, and delegates get a chance to make friends and learn a lot from each other. The Carousel Hotel take pride in providing a good standard of service to visually impaired guests, meaning people were able to relax and enjoy the experience.

Charles Bonnet Syndrome

With topics ranging from selfdefence to arts and craft, from gene therapy to guide dogs, and from retinal implants to a general knowledge quiz, there was something for everyone.

Following Jane’s article on CBS in the last issue, we would like to point out that the strategy discussed on page 5 of the magazine for addressing the hallucinations was devised for patients with macular disease, though we are advised that they are expected to be equally effective for RP patients.

RAG 2012 will be on 23-25 March 2012 and of course announcements will be made in this magazine nearer the time.

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The ‘Hardest Hit’ March London, Wednesday 11 May 2011 Some 8,000 disabled people and their representatives, carers and families marched in central London to campaign against changes to the benefit system which they say will disadvantage them.

The event was organised by the “The Hardest Hit” campaign which claims that government cuts and austerity measures are impacting on disabled people and that the most vulnerable in our society are being substantially disadvantaged.

Many of our members took part or sent messages of support.

Our Voluntary Information & Support Manager Carole Holmes was present and took the opportunity to lobby her own MP on the issue.

David Head, Chief Executive, said “Carol took the opportunity to point out the problems faced in particular by people with progressive sight loss. It is ridiculous that people defined as legally blind, with nothing more than light/dark perception, are having to appeal DWP decisions to reduce their benefit claims. It’s also really important that the expected further changes to the benefit system don’t exacerbate this problem.”

Celebrities and activists joined in the march which was entirely peaceful, and succeeded in attracting good coverage from ITV, BBC TV, and Channel 4.

Pictured is Carole Holmes MBE with Gordon Marsden (Lab), MP for Blackpool South. Mr Marsden has been supportive of the charity in the past, having spoken at RAG 2009, and Carole reported that he was very understanding at their meeting.

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Don Grocott Takes The Helm News from the Board At the Annual RP Conference next month Mr Don Grocott will take up the Chair of the RP Fighting Blindness Board of Trustees (BoT). Don joined the BoT in April 2009 and has extensive business experience to bring to the role as the charity continues to modernise and grow.

“It is with some trepidation that I step into this role.

Our previous chairman Sir Alan Rudge has been a far-sighted and diligent Chairman who has given a great deal to the charity in his fifteen years in the role“, he said. “Happily, with the charity's income rising, a realistic plan in place and a strengthened organisation already delivering, my job will be relatively straightforward.

"There are some very encouraging developments - both to improve the prospects for those with RP and to ensure that the disease is eventually overcome. RP Fighting Blindness needs more funding to support the many excellent research endeavours that are brought to us for financial support. That will continue to be the principal focus of our work”.

Sir Alan will remain on the board for a further year to facilitate handover.

Medical Trustee Retirement News from the Board Prof. Tony Moore has decided to step down as one of our medical trustees and as Deputy Chair of our Medical Advisory Board. Tony has completed two 5-year terms of office as a trustee, and will continue in the role temporarily until a replacement can be found.

David Head, Chief Executive, said “I am sad to learn of Tony’s decision not to seek re-election. He is one of the UK’s most highly respected ophthalmologists and we have been fortunate to have been able to exploit his expertise for as long as we have. I wish him well; he will certainly be missed - both professionally and as a friend of the charity.”

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f u n dr ai s i n g s to ri es f undr ai si ng st ori e s

VIRGIN MARATHON – FANTASTIC SUCCESS!

By Michelle Carter Congratulations to all our Virgin London Marathon Team runners who completed the 26 miles on Sunday 17 April 2011.

The atmosphere in London was amazing with hundreds of supporters taking advantage of the warm sunshine. Team RP all eventually completed the full 26 miles in very commendable times, in what can be only be described as warmer than average weather.

Martin Komen set his personal best at 2hrs, 58mins and 39secs.

Gemma Carter our fastest lady on the course finished in 3hrs, 16mins and 17secs. She tells us that the extra 17 seconds means she missed out on being elite, well there’s always 2012 Gemma!

Those who met us back at the Crowne Plaza Hotel and enjoyed the massages and shower say this was the best part of the day. Our thanks go to the four young ladies from Milton Keynes College, who very kindly gave their time to join us and provide massages for our runners.

Fundraising is still going well and I am sure we will reach our £50,000 target. Thank you to everyone who supported Team RP and watch for news of places for 2012 – could you be a part of elite Team RP? 22

The ‘Tour De Grouse’ 2011 Cycle

by Liz Cassidy The picture shows, from left to right, Bill Green, Lynne Taylor, Judith Clark, Paul Cooper and Mike Kelleher. Their team of 20 set off from Dundee for the Tour de Grouse on May 21 and completed the 120 mile course, raising money for RP Fighting Blindness.

The cyclists, who climbed 900 feet up Cairngorm in fancy dress, this year decided to raise money solely for RP Fighting Blindness. Over six previous years, they have raised a total of £70,000 for other charities.

The high profile annual charity cycle tour took the riders up to and around the Aviemore and Cairngorm area and is sponsored by The Famous Grouse Whisky.

Thanks to Mary Findlay for her hard work promoting the charity; she and her family have already raised over £1,000 towards this fundraising feat with a very successful pub quiz in Dundee. Mike said he chose the RP charity as he was close friends with Mary and her family.

Music For Sight Saturday 16 July 2011, Birmingham Cathedral You are invited to join us for a spectacular evening of classical orchestral music in the stunning surroundings of Birmingham Cathedral. Details of this prestigious fundraising event are on the back page of this magazine.

Please book your tickets soon. We are proud and honoured that the British Police Symphony Orchestra are again giving their time and talent for the charity. It is so important that we make a success of the event and we need your support to do that. People with RP and their families are the ones who benefit from the funds raised at this event and we want to provide the orchestra with a full venue and an appreciative audience.

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Stride For Sight 2011 24th & 25th September Don’t forget to join one of our walks in various locations around the UK this year. Stride for Sight and raise as much as you can for RP Fighting Blindness.

Details of all the walks will be added to the website as soon as they are confirmed. Check them out at www.brps.org.uk.

If there’s not one in your area, why not set one up? Stride for Sight walks can take place on Saturday 24 September and Sunday 25 September. Contact Michelle on 01280 821334 or michelle@brps.org for support and advice.

Book Your Plaice!

Camden Fish & Chips Evening 29 June 2011 RP Fighting Blindness has been chosen as charity of the month by Oliver's of Belsize Park, Camden.

33% of all the sales Oliver’s brings in on June 29 2011 will be donated to RP Fighting Blindness. If we fill both sittings (7.00pm and 8.45pm) that evening we could make up to £750.

All you have to do is book your table now - for the most worthwhile fish and chip supper you'll ever have!

To book your place, call Mario at Oliver’s 0207 586 9954 or email Mario@oliversfishandchips.com

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JUMP FOR SIGHT 2011

10,000 FT FREEFALL PARACHUTE JUMP! Imagine standing at the edge of an open doorway in an aircraft flying at 10,000 feet - the noise of the engines and the wind ringing in your ears. Now imagine leaning forward out of that doorway and letting go - falling forward into the clouds, diving down through the air at over 120mph!

What must I do to qualify for a free jump?

As the canopy opens, the steering toggles come down either side of you and you begin a tranquil parachute descent from a mile up in the air. Imagine being able to do this for FREE whilst harnessed to a professional freefall parachute instructor and at the same helping RP Fighting Blindness! Stop imagining! It's happening all the time and you can be part of it...

Raise £395 (or more!) for RP Fighting Blindness by asking your friends and colleagues to sponsor you. Please do not be put off by this amount - if you ask everybody you know to sponsor you, you will find you can quite easily raise the minimum £395 sponsorship. Every penny you raise over the minimum will be further contributing to RP Fighting Blindness.

What does the jump involve?

The jump is a “Tandem Skydive”, and you will be freefalling through the air (without the parachute deployed) for several thousand feet, harnessed to a professional parachute instructor at all times.

The jump and training are completed in one day. A tandem parachute jump is suitable for sighted, visually impaired and blind people alike.

What do I do next?

Call 01280 821334 or email michelle@brps.org.uk.

You can book online at www.skylineparachuting.co.uk/6267 3 and join us at Hinton Airfield, Oxfordshire on the 10th September 2011 for a mass fall!

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Expressions of interest now invited for

PERU TREK (MACHU PICCHU) 2012 An 11-day trek in September/October Minimum sponsorship required c£4,000 The Lost City of Machu Picchu is one of the great wonders of the world.

This unique trek takes you along a less used route, away from the hustle and bustle of the main Inca trail. Trekking through a previously unknown valley, the route includes spectacular mountain passes and long forgotten trails winding through small villages.

After the famous Sun Gate, you arrive at the stunning sacred city of Machu Picchu, a moment to treasure and one that has brought many a traveller to tears.

Expedition organisers “Across the Divide” have created a unique route which only they have permission to use. Due to the length of the trek and the sponsorship required, this challenge will only be viable with 25 or more participants.

To express interest contact michelle@brps.org.uk as soon as possible.

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Summer Fun Puzzle

1. Singer of Hey Mickey 2. _______ Ocean 3. David _______ 4. Band led by Jimmy Somerville 5. _______ Ballet 6. 100 charted with Fantastic Day 7. Coventry ska group

The winner of our spring puzzle was Dave Smedley from Nottingham who wins a £10 High Street voucher. The answers were: O, T, T, F, F, S, S, E, N 1, 2, 3, 5, 8, 13, 21, 34, 55 M, A, M, J, J, A, S, O, N KG, KW, QV, KE, KG, KE, KG, QE 0, 3, 8, 15, 24, 35, 48, 63, 80

This issue you need to know your 1980’s music. Answer clues across to reveal the name, reading down, of one of the biggest groups of the decade.

Send your answers RP Fighting Blindness, PO Box 350, MK18 1GZ or email your answers to info@brps.org.uk. The closing date is 1st July Events Calendar 2011 Reminding You of Important Dates June 25

Annual RP Conference, Euston, London (See page 16)

July 6

RP Research Information Day, Oxford (See page 18)

July 16-23

Trek Iceland 2011 (Now full)

July 10

Asics British 10k London Run, call 01280 821334

July 16

Visions of England Concert, Birmingham (See page 28)

Sept 10

Jump For Sight Tandem parachute jump (See page 25)

Sept 24-25

Stride 4 Sight nationwide sponsored walks

Sept 26

RP Research Information Day, Manchester (TBC)

December

‘Simply Christmas’ Annual Concert, Milton Keynes

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Music For Sight:

“Visions of England”

Saturday 16 July 2011 Birmingham Cathedral Doors 6.30pm for 7.30pm performance In aid of RP Fighting Blindness The British Police Symphony Orchestra Conducted by Matthew Taylor An evening of dramatic music evocative of England and in a spectacular setting.

• Malcolm Arnold

English Dances

• George Butterworth A Shropshire Lad • William Walton

Spitfire

• Edward Elgar

Enigma Variations

Book now!

Tickets £10 from www.musicforsight.org.uk or by sending cheques payable to “RP Fighting Blindness” to FREEPOST RP

A fundraising event for RP Fighting Blindness, registered charity 271729