Look Forward issue 140 - September 2011

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Look Forward Issue 140 September 2011 Charity No. 271729

Inside New Chairman Page 2 ‘Largest Grant Ever’ Awarded to Professor Robin Ali Page 3 RP Fighting Blindness Conference Page 10

The Charity Launches a New Look

Stars in the Community Page 17 Branch News Page 20

We are delighted to present our new look quarterly magazine for members and supporters of RP Fighting Blindness.

You will find the content inside as interesting as ever; this issue covers some of the latest research developments, as well as a spotlight on Professors Mike Cheetham and Alison Hardcastle and a report on our annual conference.

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Trek Iceland To Fight Blindness 2011 Page 16

Diary of Events Page 23

...continued on p7

www.rpfightingblindness.org.uk

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NEWS

Letter from the Chief Executive Welcome to your Autumn magazine You will notice some significant changes with this issue; as part of the launch of our new brand, we are now distributing this magazine to all our supporters.

For those that have received the magazine in the past, I hope you like the new ‘feel’. For first time readers, I hope you enjoy it and are able to see how your support helps us in our work.

As well as the new image, we have been very active this quarter with our annual conference, our Iceland

trek, our Patient Research Information Day in Oxford and more. All of this is reported on in this issue.

In addition, we were recently notified of a substantial legacy gift, and have taken the opportunity arising from this to approve long term grant funding for Professor Ali’s work on gene therapy, as well as finance for a new research project in Manchester.

So, all in all, a busy quarter. Once again, my thanks to everyone that has supported us; it is you who makes it all possible.

David

New Chairman Don Grocott has now taken up the Chairmanship of our Board of Trustees. Don joined the board in 2009 and has extensive business experience to bring to bear as we continue to modernise and grow.

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“A change of chairman presents the organisation with a good opportunity to review its strategies and generally refresh”, he said. Chief Executive, David Head, added, “Under Don’s leadership I am confident the charity can continue the progress we have made over the last few years and I look forward to working closely with him”.

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RESEARCH

‘Largest Grant Ever’ Awarded to Professor Robin Ali An award of £750,000 over the next five years has been granted to Professor Robin Ali and his gene therapy research team at The Institute of Ophthalmology.

This is the largest single grant the charity has ever awarded and will enable the group to extend and develop their work to include a wider range of genes.

Many genes, if faulty, can cause RP and Professor Ali’s work has been pioneering gene replacement therapy, securing proof of principle in the case of RPE65, which when faulty causes a form of RP called Leber’s Congenital Amaurosis (LCA). The team are now working on extrapolating this process to several other genes, and this programme grant will provide essential underpinning finance from 2011 to 2016.

Professor Ali writes “As a result of major advances over the last two decades, gene therapy for retinal disorders is now a realistic prospect. We are currently conducting the world’s first ocular gene therapy trial for Leber’s Congenital Amaurosis and have established proof of principle for gene therapy in inherited retinal disease. We have also demonstrated proof of concept of gene therapy in We will be financing the first year of animal models of several other the grant from our existing resources forms of LCA, and developed a and then launching a fundraising therapeutic pipeline for at least campaign to cover the costs of year 11 forms of early-onset severe two onwards; more details will be retinal dystrophies including 9 published in the New Year. of the 16 different forms of LCA. www.rpfightingblindness.org.uk

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RESEARCH “Over the next 5 years we intend to build a programme of clinical trials for various forms of retinal dystrophy. However, before we are able to advance to clinical trials we first need to design trial protocols, secure regulatory approvals and perform further efficacy and toxicity studies using vectors manufactured to pharmaceutical standards. Our immediate priority is to secure the core expertise in gene therapy clinical trials that we have established over the last five years to maintain the momentum generated by our first clinical trial.

other sources for a broad programme of clinical trials of gene therapy for inherited retinal disorders.”

This was all highly endorsed by the scientific peers that reviewed the application for funds.

David Head, our Chief Executive, adds, “Gene therapy is one of the most exciting prospects for treatment of RP in the future and we are proud to be associated with and supporting Professor Ali and his team in this key work.

“Members who have heard Robin speak on this subject recently will know he is as passionate about “Support for this essential core expertise will enable us to maintain making progress as any researcher our current clinical studies, complete we know. I am confident that this grant will make a very significant preclinical development of gene therapy for LCA4 gene therapy and difference in allowing him to do help secure substantial funding from just that.”

Manchester Grant for BEST1 Dr Forbes Manson at the University of Manchester School of Biomedicine has been awarded a grant of £97,000 for a new project ‘Modification of mutant bestrophin1 to prevent retinal degeneration’ Bestrophin is a protein that is located in the pigmented layer of the retina. The pigmented layer 4

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maintains the light-sensing photoreceptors in the retina and if its function is compromised the photoreceptors will die, leading to poor vision and eventually blindness.

A series of different heritable genetic mistakes in the gene that makes bestrophin, and that result in retinal disease, are collectively known as bestrophinopathies.

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RESEARCH copes with malformed bestrophin protein so as to prevent disease.

In previous work Manson’s team have used a cell model of the retina’s pigmented layer to study the bestrophin protein that has different mistakes in it and that cause retinal degeneration.

The ultimate aim of this new project is to find a way of chemically modifying how the cell

Once the team knows what parts of the cell are involved in dealing with malformed bestrophin protein they will test ways of modifying them so that the bestrophin protein can either work more efficiently or be delivered to the correct part of the cell using a variety of chemicals known as chaperones and proteostasis regulators. Chemical chaperones have been used in the past to correct the function and cellular localisation of a protein called rhodopsin; mistakes which are one of the major causes of RP.

Oxford Eye Hospital Patient Information Day “A Great Success” Over 230 delegates - members of the charity, other RP patients and those with an interest in RP research - attended a special information day at Oxford Eye Hospital (OEH) on 6 July.

implants, optogenetics, gene hunting and stem cell research.

Delegates were also able to hear from two patients, one of whom related his experience of the clinical trial of Retina The session, which was hosted by Implant AG's electronic retinal Professor Robert Maclaren, implant and another his Consultant Ophthalmologist at experience of cataract surgery, OEH, covered a wide range of topics which succeeded in restoring a including gene therapy, retinal significant degree of vision, www.rpfightingblindness.org.uk

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RESEARCH

fascinating opportunity for patients to learn of the progress being made with various threads of RP research.

loss of which had previously been attributed entirely to RP. The event was followed by a reception hosted by Retina Implant AG, at which patients were able to talk directly to research staff at the hospital.

We were absolutely delighted with the quality and success of the event and thrilled that so many people joined us on the day.

Professor Maclaren and his team are highly respected and we were privileged to have been given so much of their time. It was a 6

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As a result of the excellent feedback received, we are already planning more information days along a similar line. This includes two half-day seminars in September presented by Second Sight, a US company that has secured approval for their retinal implant, and a conference at UCL in London in April next year funded by the Big Lottery Fund, presenting on various threads of work at The Institute of Ophthalmology.

Some of the sessions at OEH were recorded and are available to download in MP3 format from our website at www.rpfightingblindness.org.uk.

Please note that due to some academic and patient confidentiality issues not all of the sessions have been made available.

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NEWS The Charity Launches a New Look ...continued from cover It’s not only our magazine which has undergone a revamp, you will see that the charity as a whole has taken on a new look. The trustee board agreed in January that it was time for us to ‘rebrand’, and so commissioned the staff team to carry out the task. The team put together a focus group which was made up of members, branch chairs and event participants, whose role it was to oversee the project and to ensure an excellent result which would meet the needs of our members and supporters.

We were delighted to secure the support of a graphic designer, Steven Swingler (www.steveswingler.com), who carried out the work free of charge.

He considered the responses given by the focus group, and came up with a suggested design which went to the group and the trustee board for their approval. The design work received excellent feedback, which led to a decision being taken to adopt the new look.

Blue and green were chosen as colours for the logo for their clean, clinical look and a white background seemed to meet the needs of the vast majority of focus group members. As part of the process, the decision was taken to use the name ‘RP Fighting Blindness’ as the official working name of the charity.

We are now carrying the new designs through all of our materials as a priority, while keeping costs down. All of our materials will be updated as and when existing stocks run out; please bear with us during this process.

We would like to thank Steven for his excellent work, and all of our focus group members for their input.

The new logo is loosely based on a DNA helix, while also keeping the traditional eye shape that the charity has had for many years. www.rpfightingblindness.org.uk

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FOCUS

Researcher Profile This month, we feature two eminent RP researchers, Professors Alison Hardcastle and Mike Cheetham. (The full interview is available online at www.rpfightingblindness.org.uk)

I worked in Shomi’s lab for several years and focused my research on X-linked forms of RP. I was appointed Lecturer in 2000 and Professor in 2009.

How did you find yourselves specialising in RP?

Mike: Throughout my studies I was working on diseases of the brain; I knew Professor Phil Luthert and Mike: I did my degree in Genetics in shortly after he came to lead the early 1980s. I then worked at pathology at the Institute he the University of Leeds, before persuaded me that there were moving to London and working on similarities between the processes the molecular biology of Alzheimer’s in the eye and the brain. Once I disease. After getting my PhD, my looked into vision it was clear that first post-doc was as part of a there were a lot of similarities and collaboration at the University of that it was an important area that Oxford and I then secured funding was under-researched. to work on chaperone proteins until I moved to the Institute of Alison: I wanted to focus on the Ophthalmology as a Lecturer. I was process of transforming a photon of promoted to Senior Lecturer in light into a visual signal the brain 2001 and Professor in 2005. interprets. Having switched from biophysics to genetics, it was clear Alison: I became absolutely that there was a real need to study fascinated by vision during my the genetics of the retina, as there degree in Biophysics. I was awarded was very little understanding and a PhD studentships to learn the no treatment for these conditions. “new field of eye genetics” in Since the X-linked forms of RP are Newcastle with Professor Shomi considered the most severe, this Bhattacharya who later took a became, and remains, the main position at the Institute when the emphasis of research in my lab. team moved down to London.

So, tell us a little about your academic background.

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FOCUS

have come up with ideas over tea and toast on a Sunday morning is amazing! As well as being a great scientist, Mike is a great husband, but I will use this opportunity to suggest he takes me out more often.

Mike, your current grant from us is funded by the Lottery, how much of a difference has that money made to progress?

How and at what stage of your respective careers did you meet? Did that subsequently have a bearing on your professional careers?

Mike: The grant from the BIG Lottery Fund via RPFB has helped us move forward some studies that were funded a few years ago by RPFB. Without the money from BIG I don’t think we would have been able to do it. Such studies are expensive and can fall between funders as they are beyond discovery science but too early for clinical studies.

Mike: We met shortly after I joined UCL, I had just started as a Lecturer and Alison was a senior post-doc with Shomi. We initially got to know each other talking about work in the pub and things progressed from there. Alison was seriously considering moving to the USA for her research, but I managed to persuade her to stay in the UK.

It’s great that you are a research team as well as husband and wife, but does that make it harder to leave the work at the office?

Alison: We met here at the Institute.

We talked a lot about how we might work together, so I decided to continue my career here in the UK definitely an excellent decision personally and for my research.

Mike: We often take work home with us as it’s more of a vocation than a job. Working together means that we will inevitably blur the boundaries between work and home, but we both understand the problems each other face.

Alison: The number of times we

Is there any chance of a wedding photo, I’m sure our readers would prefer this to a picture of you in white labcoats!

We are both in white, even at the wedding, which was in York in 2004. www.rpfightingblindness.org.uk

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EVENTS

RP Fighting Blindness Conference June 25 2011 the Welfare Reform Bill. She also took a series of questions which stimulated debate and underlined how important it is, to people with a visual impairment, that those administering the systems understand the disability and its implications properly.

Denise was followed by 16 year old Molly Watt, who has Usher 120 RP'ers attended the 2011 conference in London which was a Syndrome Type 2, great success. Four sessions, great which results in both hearing and sight speakers, lots of networking and loss. In addition Molly some good quality exhibitors provided delegates with motivation, has macular oedema Molly Watt, 16, who information and a chance to talk to which further spoke eloquently restricts her sight.

In about Usher many others with RP. Syndrome an inspiring presentation, Molly demonstrated a positive approach After the charity’s formal AGM to life and to dealing with and living (minutes of which will be sent with her disabilities, and spoke separately to members) we heard eloquently about her education, the from two stimulating external speakers. Disability rights advocate barriers she has faced at school, her symptoms, and her hopes for Denise Maguire spoke about changes planned to the UK welfare the future. She also presented two videos she has made to try and benefits system, explaining the educate her teachers and fellow current complex system and the various benefits available, and the students about Usher, which drew applause from the audience in their planned introduction of PIPs and 10

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EVENTS

Tim spoke about significant progress being made by research groups around the world in developing retinal implants. Whilst The third session saw the stressing that there is still a long presentation of the RP Awards. Full way for the technology to develop, details are in a separate article on he outlined how some devices are page 12 but our well-deserved already in or near clinical trial nominees and winners were warmly stage, and one device has received congratulated by a very CE safety approval and is available appreciative audience. The RP to private patients. He went on to Awards are now an annual feature describe the surgery in some detail and we will be inviting nominations and some of the electronics for all of them again in the New involved.

Year. They are possible through a Mr Jackson and Professor Marshall kind donation in memory of then went on to answer a series of member John George, after whom questions from the audience on one of the awards is named. subjects as wide ranging as the use The latter session of the day – the of saffron and the next generation Medical Research Session - was of implants. kindly chaired again by Professor John Marshall. He introduced our main speaker, Tim Jackson, an Next year’s RP conference will Honorary Consultant Ophthalmic again be held in London, on Surgeon at King’s College Hospital Saturday 23 June, though is likely to and a HEFCE Senior Clinical be held in a different venue Lecturer at King’s College London.

Tim’s interest in RP, and the subject perhaps more suitable for people with a visual impairment. Details of his presentation, relates to the Retina AG retinal implant, a device will be published in our December designed to provide artificial vision magazine and on our website shortly. for people with severe RP. own right. Molly's speech is available from the conference page of our website .

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FOCUS

Award winners We were delighted with the responses we had to our call for nominations for the 2011 RP Awards. The awards were presented at our annual conference on 25 June; we are pleased to showcase the winners below:

Winner of the John George Award for Volunteering Carole Holmes MBE Carole, who lives in Blackpool, was diagnosed with RP in 1974.

After joining the charity in 1975, Carole became a founder member of the North West branch, which was established in 1976 in Manchester.

When Carole left work in 1986 due to deterioration in her sight, she became more involved with the charity. She has since served as a member of the RP Welfare Management Committee and more recently has become the charity’s 12

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Information and Support Manager with responsibility for the Helpline, Befriending Service and the annual RAG Weekend .

As Carole says “It was a lovely surprise to receive the John George Award for my voluntary work over the last 35 years. I must mention that Beryl Duggan and Steve Goulden have worked alongside me for all of this period. The only positive side of having RP is the wide circle of lovely people I have met and in particular, Beryl and Steve.”

Winner of the RP Fundraiser of the Year Award Roger Backhouse Roger lives near Guildford with his wife and three children. He is a partner at Jardine Lloyd Thompson, a Lloyds Insurance Broker, and works in the City of London.

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FOCUS

Roger was aware that he couldn’t see at night from when he was 8 years old, but RP wasn’t confirmed until he was 16.

His mother was one of the original members of the charity and Roger had already done some fundraising for us when he made the decision to take on the London Marathon in 2010. As Roger says “I am immensely proud to have been awarded the fundraiser of the year and would like to take this opportunity to thank my brother Oliver for all his efforts in completing the Marathon with me, to my wife and family for all their support and to all the hundreds of people who kindly donated their hard earned money to help fund research to find a cure for RP.”

Winner of the Lynda Cantor Award for the Future of the Charity Graham Drew Graham is 25 years old and lives in London, where he also works as a

Recruitment Consultant for the charity sector. In addition, he runs a small web development business.

Graham knew about the presence of RP within his family for as long as he can remember, but only found out that he had RP himself at the age of 16. For most of the years following, the condition had a negligible effect on his life but the last few years have shown a noticeable decline in his eyesight.

He is now part of a development committee designed to help the charity drive forward its youth engagement and support project.

As Graham says “I'm extremely proud and humbled to have received this award and to have had my involvement recognised amidst so many altruistic and equally deserving people. I have accepted this award as a symbol of what I believe we are able to achieve and hope we can build something that stands as a testament to the faith and support that the charity have shown me.”

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FOCUS

Sir Alan Rudge Research Fund

Sir Alan Rudge, who stood down as the Chairman of the Board of Trustees at our 2011 conference, will be a familiar name (and face!) to many.

Sir Alan and his wife, Jenny, first became involved with the organisation over 30 years ago, when their daughter, Penny, was diagnosed with Usher syndrome.

Although Sir Alan was a very busy man, carving out his career and with a young family, he took the time to support us, eventually joining the Board of Trustees in 1992 and going on to become Chairman of the Board in 1996.

that Sir Alan will continue to serve as a trustee for the forseeable future.

In recognition of Sir Alan’s work and to mark our sincere thanks for everything he has done to help the charity, we have set up a fund in his name to ensure the continuation of his aspirations to find a treatment for retinitis pigmentosa.

To donate to the ‘Sir Alan Rudge Research Fund’ please send your Over the years, Sir Alan and Lady donation to the Buckingham office Rudge have raised many thousands marked clearly that it is intended of pounds for the charity, and have for the ‘Sir Alan Rudge’ appeal. been instrumental in helping the Alternatively, you can donate online organisation grow and develop into by visiting what it is today. We are delighted www.tinyurl.com/alanrudge 14

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RESEARCH

RP Research in Leeds RP research in Leeds continues to develop. Mr Martin McKibbin, an ophthalmologist from St. James’s, and Professor Inglehearn, from Leeds University, are continuing to try to identify new genes that, when faulty, cause RP. Most participants for this research are recruited from the clinics that Mr McKibbin provides in Yorkshire and to date this has identified faults in new or known genes in almost 60% of large RP families in the local population.

application from RP Fighting Blindness. The findings will be used to produce a resource for anyone thinking about genetic testing for RP in the future and may also influence access via the NHS.

The project aims to recruit 200 The team are also working with participants who will be invited to staff at the Roslin Institute in complete a telephone questionnaire, Edinburgh on a strain of chicken lasting about 30 minutes; some will with RP. The genetic fault in the also be invited to an interview at a chickens has only recently been convenient location. The project is identified and it may be suitable for open to anyone over 16 with RP or treatment by gene therapy, which other inherited retinal disease, may then help develop similar although the project’s nature may treatment in humans. make it difficult for people with a significant hearing impairment and A further new Leeds project is those living outside of the north of recording what people with RP know England to be involved. If you would about genetic testing, their hopes like to take part, or to get more and fears about it and whether it information, please visit the project should be available through the website (www.Leeds.ac.uk/RETT/) NHS. This builds on the results of a and contact the researchers 2009 RAG meeting survey and local directly. focus groups and has been funded by the National Institute for Health NB: RPFB is not currently funding Research following support for the projects at Leeds University. www.rpfightingblindness.org.uk

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FUNDRAISING

Trek Iceland To Fight Blindness 2011 Fifteen hardy and adventurous trekkers, including 8 with RP, tackled some of the best hiking the beautiful country of Iceland had to offer for a week in July, whilst raising money for our research work. The adventure took the team to the remote highlands, several hours drive from the capital Reykjavik.

RP is no barrier to adventure

Onwards and Upwards

As David Head, Chief Executive, says “Once again RP trekkers show how sight loss doesn’t have to be a barrier to adventure. What a great achievement by a great group of people.”

The group were accompanied by four members of the Icelandic RP Society for two days of the trek, adding a new dimension to the event. The trek audio-diary recorded by Julia Hawkins was subsequently featured on BBC Radio 4’s In Touch and many of the trekkers secured media coverage of their adventure and fundraising events, raising the profile of RP and the charity along the way.

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Emily takes the lead on the final day James Smale takes a well earned rest

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FUNDRAISING

Stars in the Community We are extremely lucky to have so many supporters fundraising in their communities.

They all raise considerable amounts of money, which supports the research for a cure.

Our most recent community stars include: Harriet Kininmonth and the team who successfully organised the second Sussex Barn Festival, on July 2nd 2011. So far this year they have raised a staggering £3115.

Mark Brant and his team, climbed Mount Snowdon blindfolded.

Mark’s inspiration for the challenge was his wife, Lisa, who has RP. Mark wanted to know what it was like and set about doing daily chores wearing our simulation glasses. In order to try and do something to

help, Mark and some of Lisa’s family then decided to, in his words “do something seemingly stupid” and on the 25th June 2011 they climbed Snowdon blindfolded raising over £2000.

Well done to everyone and thank you!

Remember to tell us about your Community Stars by emailing michelle@rpfightingblindness.org.uk www.rpfightingblindness.org.uk

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NEWS

Batman Glasses Steve Richards, 60, who has had RP since childhood, listened to the review of shades in the last issue and wrote to us…

“Glare is a major factor and I found that if I covered my eye with my fingers curled to a pinhole the problem reduced. Following this I made some black cardboard cutouts to look through and the result was helpful. I am no optician, but I concluded that my central sight was being compromised by light from the sides and above.

Presumably with a full field of vision this is of value but I believe it just enters my eye and bounces around in all directions, spoiling any image that I can see.

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I had an old pair of dark wraparound shades that I hadn't got on with because they made things too dark. Anyway, I drilled a couple of holes in the lenses, along the lines of the pinholes I'd made in the cardboard. They helped by cutting out the glare from the skyline.

Using masking tape, I made a rectangle around these holes, with the perimeter just on the edge of my useful central vision. A friend who was handy with a fret saw and files then cut a neat rectangle using my tape as his guide.

I have been using these 'holey' wraparounds now for 8 years, whenever I go out. I also use Mediview, colour filter prescription 'blue block' specs which protect the retina from UV light.

I sometimes wonder if any manufacturer would like to follow up my 'holey shades' - I’ve overheard a number of kids say they are 'cool'!”

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EVENTS

RP Patient Information Days Retinal Implants

of the doctors involved. Retinal implants are designed to replace In collaboration with Second Sight the function of lost photoreceptor we are pleased to cells in the retina with an electronic equivalent; Second Sight is one of invite you to two patient information sessions about several companies developing such devices and their Argus II has been the Argus II retinal implant which has recently been given CE marking submitted to NICE for approval for NHS funding.

(European safety approval). These will be on 26 September 2011 at Places at the seminars are limited Manchester Royal Eye Hospital and to 50 so please email 29 September 2011 at Moorfields info@rpfightingblindness.org.uk or Eye Hospital, London, both from call Michelle on 01280 821334 to 3pm to 6pm. secure your place. Details of the The events should give many RP programme are available in the patients the opportunity to learn events section of our website about the device and ask questions www.rpfightingblindness.org.uk

Retina International Conference Hamburg July 2012

international-2012.de. The conference fees are â‚Ź120 per Stephen Jones, person if you take advantage of Retina International Rep early registration before 15 March 2012; accommodation costs vary of RI conferences are held every two years and the next will take place in course. You can also keep up to date by registering online for the Hamburg, Germany, on 14 and 15 July 2012. Some of the leading conference newsletter. retinal scientists from around the We know that members who have world will speak and a youth attended past conferences have programme is also planned. found it a fantastic experience so Full details are at www.retinawe hope to see many of you there! www.rpfightingblindness.org.uk

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BRANCHES

News from our Volunteer Groups Around the UK Devon & Cornwall Julie Allen

many collectors out as possible using the bright new cans and tabards. If you would be able to help, or want to know more about ‘Stride for Sight’, please phone 023 8047 6894, or email hampshirebranch@ rpfightingblindness.org.uk.

We are delighted that Mrs Gale’s annual cream tea in July was so well attended! Culinary delights and good company resulted in nearly £1,000 being raised for RP research. Thank you to all concerned.

In September we are taking part in ‘Stride for Sight’; please contact me Isle of Wight if you would like to take part. Best Colin McArthur foot forward everyone!

Hampshire Steve Harris The ‘Stride for Sight’ weekend will be with us soon, and we are walking the Hampshire coast on the Saturday, 24 September; why not come along and join us from Hill Head to Leeon-the-Solent and back?

We have made a promising start to our Hampshire street collection season this year, and we must thank everyone who has turned out so far to shake the cans for us. We aim to complete the season with a flourish on 1 October in Romsey and it would be good to have as 20

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Back in May, as part of the Isle of Wight Walking Festival, we organised a ‘Stride for Sight’; a six day 72 mile walk round the island’s coastal path. Despite a twisted ankle, numerous blisters, and

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BRANCHES aches in muscles we didn’t even know we had, the Magnificent Seven - Colin & Linda McArthur, Pen, David, Ros, Steve, Rowdy and Otis the Jack Russell - walked the whole route. Throughout the week, we were joined by many others for a more acceptable 12 mile stage or two. We had set ourselves a target of £7,200 to go towards research being carried out by Professor Lotery at Southampton Hospital but at the last count, we’d raised over £14,000. To donate, go to www.justgiving.com/penny-staines.

Scotland East Jim McClean I must mention the brilliant presentation given to us by the Audio Description Association (Scotland) rep Irene Mackenzie at our June meeting. Some of our troops have used this, saying it greatly enhances a theatre night out as they get far more out of what’s happening. Irene was brilliant on the day. Is there any organisation doing this near you?

We’ve got folk raising money in all sorts of ways these days including a wonderful young lass jumping from Dorset a perfectly serviceable plane. The Toby Hart same family recently held an event At the time of writing a hot summer in their garden with lots of fundraising and fun going on. Here I still hasn’t materialised but this met folk I use to work with and one hasn’t deterred our fundraising, including a successful race night at of them offered to get his workmates together to cycle for the the Piddle Inn and a bucket cause; just shows you one event can collection on a cold evening at lead to another. One member also Wincanton racecourse. Thanks as arranged a Waitrose store in ever to Janet and Graham for this Edinburgh to include us in their hard work. monthly collection and donations Looking forward, two committee are coming in good style. members, Linda Still and Jonathan At our meeting on Sat Nov 5 at Andrews, are taking part in the Jump for Sight event. If you can, 11am, Professor Alan Wright will be please sponsor them at speaking to the group; we’re all www.justgiving.com/jonathanlooking forward to that and everyone andrews-parachute-jump-2011. is welcome. www.rpfightingblindness.org.uk

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BRANCHES

In Memory David Stevens (Yorkshire)

Muriel Grant (Scotland)

It is with great sadness that the Yorkshire Branch reports the sad passing of our Secretary and fundraiser, David Stevens, who lost his battle with cancer, which he fought bravely and with dignity.

Despite having treatment he continued to collect funds for RP Fighting Blindness. He will be greatly missed and we send our condolences to his wife Betty and the family.

Sadly we have to report the death of a long serving Scottish member, Muriel Grant, aged 92, following a fall. Ian McClenaghen, a close friend of Muriel, writes “Although Muriel did not suffer from retinitis pigmentosa, her sister Irene did.

Muriel joined the then Glasgow branch and supported and worked with her sister there in a confident manner.”

Donations in lieu of flowers are welcome and will be divided between RP Fighting Blindness, Cancer Research and Dove House Hospice in Hull, where David was cared for in his last week.

Our sincere condolences go to Muriel’s family, especially her son Murray.

Website / Facebook update As part of the rebrand process and our recognition of our new name, our web address has now changed to www.rpfightingblindness.org.uk. The content of the site and accessibility options remain as excellent as ever.

If you are not a member of our Facebook group – do sign up now! Join 1,500 other RP’ers in conversation at www.rpfightingblindness.org.uk/facebook 22

The RP Helpline 0845 123 2354

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EVENTS

Diary of Events 10th September 2011 Jump 4 Sight – Tandem Skydive at Hinton Airfield 24th & 25th September 2011 Stride 4 Sight – contact your branch to get involved or start your own walk 26th September 2011 Second Sight RP Information Day – Manchester 29th September 2011 Second Sight RP Information Day – London 11th March 2012 Adidas Half Marathon – Guaranteed Places Book your place NOW. 17th April 2012 Moorfields Eye Hospital – Patient Information Day Supported by the Big Lottery Fund.

Places will be limited.

22nd April 2012 Virgin London Marathon – Guaranteed Places Book your place NOW. 23rd June 2012 AGM / Conference – Novotel, London St Pancras For more information about any of these events, call Michelle on 01280 821 334 or email michelle@rpfightingblindness.org.uk www.rpfightingblindness.org.uk

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FUNDRAISING

22nd April 2012 26 miles and 385 yards Are you brave enough to take on the London Marathon challenge in 2012?

Can you raise £2,250 in sponsorship?

• Limited London Marathon places available, please register NOW • Places also available on the Adidas Half Marathon Register for either NOW by emailing michelle@rpfightingblindness.org.uk

The RP Helpline 0845 123 2354

www.rpfightingblindness.org.uk