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Look Forward Issue 143 June 2012 Registered Charity No. 271729
Inside Photoreceptor Transplant Restores Vision in Mice Page 3 Treatment for X-linked RP in Dogs Page 7 First UK Patients Receive Retina Implant AG Technology Page 8
Breakthroughs in April Two major research news stories emerged this quarter, representing genuine and significant progress in the search for treatments for RP. Work part-funded by RP Fighting Blindness resulted in the restoration of sight in RP mice at UCL while the German company Retina Implant AG announced successful trials of their device in Oxford, London and Hong Kong. More inside‌
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A Patient Experience Page 10 Young RP Artist Wins Art Competition Page 18 Stars of Our Community Page 23 Meet The Researchers Page 24 ...and more
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NEWS
Letter from the Chief Executive David Head MBA April may have been one of the wettest months on record for the UK, but for us it was a month of really good news as far as RP research was concerned. The news from UCL, Moorfields, and Oxford University is covered in detail later in the magazine and I hope you will find it as fascinating and inspiring as I did.
time millions of people learnt about the condition and about this charity. That has to be good news as well. As we approach the second half of the year it’s amazing how quickly time is passing. In July we will be attending the Retina International Congress and it’s been two full years since the last one. I hope we will see some of our members and readers in Hamburg, where we will learn about RP research from around the world and meet RP people from over 30 countries.
I hope you enjoy this issue of your Purely by amazing co-incidence (I’m magazine, and thanks for your afraid I can’t claim credit for continuing support. planning this) the two keynote speakers at our conference this month are Professors Robin Ali and Robert MacLaren, who announced the breakthroughs. This will be an amazing chance to hear from – and RP Fighting Blindness funds to ask questions of – two of the medical research into retinitis most eminent RP researchers in the pigmentosa and also offers a world. However, if you would like to range of information and support take part, you must have confirmed services to patients your conference place with us in and their families. advance this year, as we are PO Box 350 working with a new venue and having to operate a booking system. Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk It’s not often that RP hits the mainstream media headlines and this 2
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P: 01280 821334
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RESEARCH
Photoreceptor Transplant Restores Vision in Mice Scientists from UCL Institute of Ophthalmology injected cells from young healthy mice directly into the retinas of adult mice that lacked functional rod-photoreceptors. Loss of such photoreceptors is the cause of blindness in many human eye diseases including RP.
Professor Robin Ali UCL Institute of Ophthalmology
In a landmark announcement in April, scientists funded by the Medical Research Council and RP Fighting Blindness have shown for the first time that transplanting light-sensitive photoreceptors into the eyes of visually impaired mice can restore their vision.
The group’s research suggests that transplanting photoreceptors – the light-sensitive cells that line the back of the eye – could form the basis of a new treatment to restore sight in people with retinitis pigmentosa.
There are two types of photoreceptor in the eye – rods and cones. The cells transplanted were immature (progenitor) rodphotoreceptor cells. Rod cells are especially important for seeing in the dark as they are extremely sensitive to even low levels of light. “…forming connections…” After four to six weeks, the transplanted cells appeared to “be functioning almost as well as normal rod-photoreceptor cells and had formed the connections needed to transmit visual information to the brain.” The researchers also tested the vision of the treated mice in a dimly lit maze. Those mice with transplanted rod cells were able to use a visual cue to quickly find a hidden platform in the maze www.rpfightingblindness.org.uk
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RESEARCH
whereas untreated mice were only able to find the platform by chance, after extensive exploration of the maze.
Professor Robin Ali, who leads the research team, said, “We’ve shown for the first time that transplanted photoreceptor cells can integrate successfully with the existing retinal circuitry and truly improve vision. We’re hopeful that we will soon be able to replicate this success with photoreceptors derived from embryonic stem cells and eventually develop human trials. “Although there are many more steps before this approach will be available to patients, it could lead to treatments for thousands of people who have lost their sight.” Dr Rachael Pearson from the
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Ophthalmology Institute added, "We are now finding ways to improve the efficiency of cone photoreceptor transplantation and to increase the effectiveness of transplantation in very degenerate retina. We will probably need to do both in order to develop effective treatments.” The researchers had demonstrated previously that it is possible to transplant progenitor photoreceptor cells into an adult mouse retina. In this latest study they optimised the procedure to increase the number of cells integrated into the recipient mice and so were able to restore vision. “…fantastic progress…” As David Head, our Chief Executive comments, “This is fantastic progress and exciting for patients faced with sight loss as a result of RP. To read that cells appeared to be functioning almost as well as normal rod-photoreceptor cells and had formed the connections needed to transmit visual information to the brain is truly amazing.
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RESEARCH
“Once again RP Fighting Blindness is proud to be associated with Professor Ali and Dr Pearson’s work; such cutting edge research is offering hope for the 25,000 people across the UK affected by RP. Preserving and restoring sight are our ultimate aims and this is a great step forward.” Video footage of Professor Ali describing and demonstrating the mouse maze is available on our website, as is the full research paper as published in Nature. http://tinyurl.com/rp-research
continues to do so, through a number of research grants. Included is a grant of £190,000 to support this project. What happens next? It is too early to say at present. Ultimately the objective is to secure the approval and funding for human clinical trials of similar treatments, but the time frames for this are uncertain. Though the work is very exciting, even getting to the stage of securing approval is a long one and then trials may take several years. It would be unfair on RP patients for us to speculate on the timescales. Where can I learn more?
Questions and Answers How is RP Fighting Blindness involved?
We will of course keep readers up to date with research news through this magazine and on our website. For those attending our conference in June, Professor Ali will be one of our keynote speakers and you will also be able to ask questions of him and other researchers during the afternoon session.
As readers will be aware, the charity has supported Professor Ali's work for many years and
www.rpfightingblindness.org.uk
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EVENTS
Carrots NightWalk – See London in the Dark 2012 Friday 21st September 2012 Raise funds for RP research in partnership with Fight For Sight by joining Team RP on a fantastic nighttime scenic walk around London.
Starting and finishing at the iconic BFI IMAX, the Carrots Walk route will take in some of London's most spectacular night-time sights; the vibrant Southbank, the contemporary Park Plaza Hotel, the historic Shakespeare’s Globe, the
mighty HMS Belfast, the distinctive City Hall, the magical Tower Bridge, the imposing Gherkin in the heart of the City, the beautiful St Paul’s Cathedral, the spectacular London Eye and some of London’s real hidden gems. 6
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For further information or to register please contact michelle@rpfightingblindness.org.uk or call Michelle on 01280 821334 Registration fee £25 with minimum sponsorship of £225 per walker.
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RESEARCH
Treatment for X-linked RP in Dogs Researchers from the University of Pennsylvania in the United States have developed a treatment for XLinked Retinitis Pigmentosa (XLRP) in Siberian husky dogs. Their success in treating the dogs also holds promise for treating XLRP in humans. In order to restore vision, the researchers Drs. Beltran and Aguirre used a single subretinal injection of healthy Retinitis Pigmentosa GTPase Regulator (RPGR) gene, which is generally the damaged one in XLRP. A virus which targets rod and cone cells was used along with piece of genetic code ensuring the gene would only activate if the virus entered the appropriate cells. If the results of this trial can be repeated, it will mean that it is possible to prevent the development of XLRP in dogs and then perhaps people with the genetic mutation. A leading researcher at Moorfields told us "This is exciting news − the work is from a very good group and is an important step on the road to therapy for X-linked RP. But it also illustrates how difficult it can be; they tried several approaches and only some worked."
What is very notable is that the treatment appears to restore damaged rods and cones in cases where the disease has progressed. Beltran and Aguirre were able to show that the treatment repaired connections to other neurons which send signals from the retina to the brain. However, this is a preliminary study, using a small number of dogs − longer term testing and then clinical trials will be needed to ensure any proposed treatment is safe and effective.
www.rpfightingblindness.org.uk
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RESEARCH
First UK Patients Receive Retina Implant AG Technology The first of 12 UK patients have received subretinal implants at King’s College Hospital and Oxford Eye Hospital.
Mr Jackson and Professor MacLaren commented: “We are excited to be involved in this pioneering technology… the visual results of these patients exceeded our expectations. This technology represents a genuinely exciting development and is an important step forward.” One of the Retina Implant AG, the German firm patients, Robin developing subretinal implants for Millar from patients blinded by RP, announced London, said, in May that the first UK patients “Since switching have been successfully implanted. on the device I am able to detect light The UK trial is being jointly led by and distinguish the outlines of Mr Tim Jackson at King’s College certain objects… I feel this is Hospital and Professor Robert incredibly promising for future MacLaren at the University of research and I’m happy to be Oxford. contributing.” Since receiving the device in midApril, the first patients are beginning to experience restoration of ‘useful vision’. The patients were able to detect light immediately when the microchip was activated and further testing has shown them able to locate white objects on a dark background. Patients will undergo further testing as they come to adjust to the chip. 8
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Patients received a 3mm x 3mm chip with 1,500 electrodes implanted below the retina. The company claim that earlier results show placement of the implant below the retina, in the macular region, provided optimum results allowing patients to recognise objects and to read large letters. The company also announced that
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RESEARCH
the first of three patients to be implanted at the University of Hong Kong Eye Institute has regained useful sight.
brings hope to people who have lost all their sight as a result of RP. We look forward to hearing details from Professor MacLaren at our conference in June, and then to “The UK implants represent a more results in the coming significant milestone in our mission months.” to restore vision to retinitis pigmentosa.” said Dr Walter-G. Wrobel, CEO of Retina Implant AG. Who are Retina Implant AG? “The two teams have done an excellent job and achieved exciting results. We look forward to continuing the momentum achieved in the trial thus far and to submitting for commercial approval Retina Implant AG is a leading developer of subretinal implants when this phase of research is for blind patients. Founded by completed.” Dr Eberhart Zrenner in 2003 with The company claims that the vast private investment and with the majority of implanted patients are goal of developing a fullyexperiencing visual perception functioning electronic retinal indoors and outdoors in both dim implant to restore useful vision to and bright environments and have the blind, the company began reported the ability to see objects implanting in humans in 2005. up to 30 feet away. Our Chief Executive David Head added, “This is exciting and significant and we congratulate Retina Implant AG and the two lead researchers. The success they’ve had in restoring functional vision www.rpfightingblindness.org.uk
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CASE STUDY
A Patient Experience 54 year old RP Fighting Blindness member Chris James is taking part in the Oxford clinical trial of retinal implants. He works full time at Swindon Borough Council but took time out to talk to Look Forward about his experience.
Chris, thanks for talking to Look Forward. It must seem a bit tame after Sky News. How have you and your family coped with all the media attention, and was it expected?
on me like the Oxford English Dictionary, I passed the tests and was the first recipient of a Retina Implant AG device in the UK in March.
I've done interviews with BBC and Sky TV, various radio stations including one in Montreal and many newspapers. I didn't realise when I signed up for the trial that it would generate so much media interest. The surgery took around ten hours How did you first get involved in the and involved implanting the chip which is attached via a cable in the project? skull to a coil. I now wear a battery It was from an article in the Winter pack which has an external magnet 2010 edition of this magazine which powers the coil. looking for candidates who fitted a criteria to undergo a retinal implant in either Oxford or London. Oxford’s Many of our members are asking John Radcliffe Hospital have a file the obvious question, which is 10
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CASE STUDY
“What can you really see?”. How would you describe it to another RPer, someone who understands what it is like to be blind or nearly blind? To be honest it’s far too soon. I’ve only had a handful of training days with the device so far and it’s like I am learning to see all over again. Close up I can already make out light objects on a dark background. I’d describe it as a light grey on a darker grey, and like looking through a dirty window. Hopefully I will be able to make out more images as I get used to stimulating the brain to see again. Ask me again in a few months!
My hobby for over 40 years has been motorsport. Although I can’t see the racing, I report on meetings at Castle Combe Circuit for BBC Radio Wiltshire and have done so since 1989.
I’d love for the device to give me Tell us a little bit about how you enough perception that I can walk would like the implant to impact on through the paddock and your own future? distinguish between the racing cars and standard cars. At the moment I I was, and still am, working for the local authority in Swindon. I lead a rely on the sounds alone. fairly hectic life − as well as I was diagnosed with RP in the early working full-time I’m also a 1980's − I had been struggling with Committee member for the night vision and thought I wasn't Swindon Branch of the Campaign eating enough carrots. I was for Real Ale and I’ve been actively registered blind in 1990 so I’ve lived involved over the years with RP with this for a long time. Who knows Fighting Blindness. what the future will bring? www.rpfightingblindness.org.uk
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NEWS
Patient Involvement: Research into Therapies for Rhodopsin RP 2½ years on from her last article, Liz Illingworth writes about being a member of the Stakeholder Liaison Group (SLG) on this project. Background
our membership and other RP patients. That will include taking In 2008 the Big Lottery Fund (BLF) part in an open day in September granted 3 year funding for research, (details below). by the Institute of Ophthalmology, From the outset it was important into potential drug treatments for for us to try and understand the rhodopsin RP, a form of dominant RP. When the call came for patients medical science. We learnt that inherited mutations in rhodopsin, to join the SLG attached to the the light sensing protein of rod project, I volunteered. I’d been a member for 25 years but never felt cells, are a common cause of the urge to get involved before, but dominant RP. These mutations as 3 generations of my family have form clumps of aggregated material been affected by this type of RP, the similar to those found in Alzheimer’s, which cause the rod research seemed relevant – and I cells to die − leading to damage to was curious! cone cells, thus affecting daylight The first of nine meetings took vision. place in late 2009 at the Institute. The Research The core members are the project leader, Professor Mike Cheetham; a post-doctoral research worker and The aim was to test a number of drugs which, in previous research, PhD students from the Institute; had been shown to reduce the toxic David Head and Stephen Jones effects of mutant rhodopsin. The from RP Fighting Blindness; and 5 hope is that some of these could be people with RP – ie the ‘stakeholders’. Apart from attending developed to delay or prevent blindness in RP patients. the meetings our main role has been to communicate progress to The first hurdle was to import
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NEWS suitable mice and rats, which seemed to take ages and highlighted the bureaucracy involved in medical research. Once they arrived the research team set to work testing 2 drugs by looking at changes in the rodents’ retinal cells and function, and comparing the results with untreated animals. Improvement in function was measured in a number of ways including microscopic examination of cells and electroretinography. At one SLG meeting we were shown a film of how treated rodents reacted to a series of flickering lights – rather like a magic lantern.
been good to sit alongside David and Stephen to see how charities like RPFB and research organisations collaborate – particularly for funding. One of the stakeholders has a background in medical research but the rest of us have sometimes found ourselves way outside our comfort zone. Despite that I think we have all widened our scientific knowledge – though maybe wouldn’t pass any sort of test on α and β waves!
We have also found it valuable to spend time talking together. We are all at different stages of the RP ‘journey’ and have learnt from each Encouraging results have been other – for example by sharing shown in rats and mice treated with advice about the benefits of one drug, where tests suggest registering as sight impaired and improvement in light perception. wearing goggles in the shower after The date for the original BLF cataract surgery. funding has now expired, but the I have increased my understanding team has been given more time because there was a change-over in of what causes RP to progress – a the post-doctoral workers last year. benefit in these days of the ‘expert If further tests prove positive it may patient’. It’s been good to stretch my brain in new ways. I genuinely be time to approach drug companies to seek further funding. feel I have a stake in this project and a desire to see it succeed. But Stakeholder Perspectives – I’m realistic; I know potential drug It has been a real privilege to meet therapies won’t cure RP, they may Mike and his team, gain insight into only halt its progress and I am how a research project works and unlikely to benefit personally from contribute to discussions. It has new treatments. This is the first
www.rpfightingblindness.org.uk
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NEWS time stakeholders have been involved in an RPFB research project and if the opportunity to get involved arises again I would urge you to volunteer. Your horizons will definitely be widened. Mike also said, “I've found the SLG a very interesting and rewarding experience. The members have really given me a much better understanding of what it is like to have RP and added an extra dimension to our research focus.”
Our open day is on 18 September at the Institute for Child Health. This will give the rest of the RP community the chance to hear about the project, and the results so far, from the research team and the members of the SLG. Details of the event are on the back page of this magazine and I look forward to meeting you then.
Trustee Roger Green Steps Down There are risks in singling out an individual for praise, but we must acknowledge Roger Green who retired from the board in February.
went on to become Chairman of the Management Committee and of the Branch Chair’s Committee. During this time, he navigated the charity through some sensitive issues, always keeping calm and offering wise counsel whilst maintaining the integrity of our charitable aims.
He led the Steering Group whose proposals led to radical changes in Roger has been at the heart of the the status of the charity and was charity since its formation, serving appointed to the board in 2007, since the first AGM in June 1977. He serving as Vice Chairman from and his wife Margaret founded our 2008. Roger’s diligence and Midlands Branch and, despite conscientious attitude to these working full-time and with three voluntary roles was exceptional and children, took a very active part in we will all miss his valuable all aspects of the charity. Roger contribution. 14
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EVENTS
Running Events Many thanks must go to our magnificent runners who took part in the Virgin London Marathon on Sunday April 22 and in the BUPA London 10k on Sunday May 27. Team RP Virgin London Marathon • Andrew Currie • Damian Eddyshaw • Alan Hilton • Lando Hilton • Rob James • Peter Maguire • Russell Sherr • Nick Vaughan Team RP BUPA London 10k • Fiona Copeland • Alpa Khakhria • Linda Young • Dan White • Emma Woodhead Places are still available for the Asics London 10k in July. For further details or to register please email michelle@rpfightingblindness.org.uk or call 01280 821334 www.rpfightingblindness.org.uk
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NEWS
Outreach Update Sue Drew, the charity’s Outreach Officer, gives an update on what’s been happening over the last quarter... Our outreach work in the first half of 2012 continues to be busy and varied. When I last reported in the spring newsletter, I was due to attend the National Blind Children’s Society (NBCS) Retinal Dystrophy Family ‘Supporting Parents’ Day in February. This was a full day event held at the Queen Alexandra College (QAC) in Birmingham. I was invited as a guest speaker and the event was attended by 28 parents of children with RP. It was a very successful day with a number of guest speakers and covered aspects such as genetics, the eye clinic, diagnosis, educational advocacy and family support. As a direct result of this event I then attended the NBCS Family Group Leaders Event on Saturday 12 May, with a view to working with the charity to plan and run our own parents’ conference later in the year. Ultimately, if there is enough interest from parents, we envisage 16
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setting up our own parents’ group. We hope that this will sit alongside other information and support services, such as our helpline, telephone befriending service and young people’s group. Our aim is to provide more support to people by enabling them to work with us to help and support one another through times of difficulty and stress and, in addition, to share information and promote positive outcomes for children. In February I attended the first Retinal Nursing Conference run by Moorfields Eye Hospital. This was held at the Institute of Child Health in London and was attended by over 60 retinal nurses from around the country. I was invited not only to speak about RP Fighting Blindness and the work we do but also to present the parent’s perspective of diagnosis and follow up support. This was an amazing opportunity to be able to inform and influence so many of the nursing staff working with RP patients across the UK. In April I was invited to speak at Moorfield Eye Hospital’s Retina Patient Day in London, which I know many of you also attended. This event was the first of its kind held
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NEWS
by Moorfields; it was a fantastic opportunity to hear directly from the top researchers and clinicians working in the field of RP and to have the opportunity to ask questions. There were over 250 delegates and the event was a great success. Besides the exciting research news, and prospects for future treatments for RP, the most impressive news I heard was the investment Moorfields is making in the area of patient support, with the introduction of a second nurse counsellor, two genetic link nurses and ultimately three or four Eye Clinic Liaison Officers. This is a huge step towards improving support for their patients.
QAC Sight Village (photos courtesy of QAC)
recognized as belonging under the RP banner, for example, Lebers Congenital Amaurosis and Sight Village Scotland took place over the 24 & 25 April in Edinburgh Choroideremia. I will be doing some and Glasgow. As always, it provided future work to attempt to address an excellent opportunity to engage this. with existing members and to meet As always, it is not possible to people with RP who are new to the include all the details of our work charity as well as informing some within the limitations of the healthcare professionals. quarterly newsletter, but if you Something which comes up have any questions at all, please frequently at these and other do not hesitate to contact me events is the need to make patients on 01280 821334 or and medical professionals aware sue@rpfightingblindness.org.uk. that we represent retinal I am always happy to discuss dystrophies that may not be clearly any area of the outreach work. www.rpfightingblindness.org.uk
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NEWS
Young RP Artist Wins Prestigious Art Competition 12 year old George Nicholson, who has less than 10 degrees of vision as a result of retinitis pigmentosa, won in his age group in the Young Art Oxford annual competition. The 2012 competition attracted over 1,800 entries from 33 schools. As a result George’s picture has been displayed at the Ashmolean in Oxford and the prestigious Royal College of Art in London.
When George started to lose his sight, he became withdrawn and lost confidence, but through his love of art and music, he is now living life to the full and embracing his artistic talents.
see right in front of me. But I’ve got used to it.”
Many of his pictures portray people in shadows, demonstrating the He was named a winner way in which he in the Young Art Oxford views the world. George's competition despite the George said art winning judges knowing nothing allowed him to picture about his condition or express himself and that he is registered he was excited to have won, adding, blind. The Barford St Michael schoolboy said: “I like using pastels. And I draw a lot of comics.” George’s winning “I didn’t really think I’d win so when I was told, it piece depicts his friend in front of a tree. was really exciting. “I was about seven when they told me about my condition. I can’t see around me, I can only
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He has also designed a £30 note which can be sold for £30 to raise money for an electronic braille note-taker for his school.
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FUNDRAISING
Four Capitals Dinner London - Belfast - Cardiff - Edinburgh Thursday 1st November 2012 • 7pm – 11:30pm Join RP Fighting Blindness for this grand dinner – held simultaneously in four of the UK’s greatest cities! On November 1st we will be hosting a fun evening of fine dining with an autumnal theme. Starting with a champagne reception, tables of ten will enjoy a delicious evening meal accompanied by wine (and soft drinks) in a beautiful setting. Dress is black tie – dress to impress!
For further information and details of how to book your tickets for this event, please contact Michelle Carter on 01280 821334 or email michelle@rpfightingblindness.org.uk www.rpfightingblindness.org.uk
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BRANCHES Dorset Branch News Hazel Hart We had a lovely bright day for our AGM in March, when we were pleased to welcome David Head as our guest speaker. It was so interesting to learn the positive effects the recent changes have had upon the progress of the charity. Since then, we have kicked off our fundraising with a collection and have more fundraising plans for later in the year. Thanks to all those who have helped out so far, and, as ever, if anyone can spare an hour or so to help with a collection, please ring Toby Hart on 01202 744344. The more the merrier!
you know about this amazing feat of endurance, and ask people to send donations to our Treasurer, Lorraine Nutland at 25c Mudeford, Christchurch, Dorset, BH23 3NQ or ring Lorraine on 01202 474890 if you would like a sponsorship form. Sorry but there is no on-line facility for this event. Cheques payable to RP Fighting Blindness, please!
And if you fancy a lovely summer garden cream tea, Janet and Graham Keen have kindly offered to host a social event in their garden at Piddletrenthide for our members and their personal guests. This will take place on Sunday 12 August, at 2:30pm. Please telephone Janet on 01300 348851 by Friday 10 August to tell her if you would like Antony Leadbitter, a friend of to come, so she knows how Dorset members Graham and Janet many scones to provide! Keen, is currently training to cycle an amazing 710km along the Pyrenean Coast to Coast Route and has chosen to raise money for the charity. Cycling at an altitude in excess of 1,100 metres, this would be a challenge for anyone, but Antony has had serious health problems himself in the past, which makes it all the more admirable. His trip starts on 16 June and he would love to raise as much as possible. So please tell everyone 20
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BRANCHES Hampshire Branch News Steve Harris
We held our Annual General Meeting on Saturday 21 April at our usual venue in Winchester. Two of our long-serving committee members, Paul Hopewell and Christine Medway, have decided that the time had come for them to stand down from our committee, so we took the opportunity to offer them our very grateful thanks for their enormous contributions to the Branch over many years. Julia Hawkins then gave us a wonderful presentation of her experiences on the charity's Iceland Trek last summer, and she played a spectacular DVD, which included many stunning photographs and some very amusing audio extracts. We then welcomed Dr Heather Thomson from Professor Lotery's
medical research team at the University of Southampton, and she brought us right up to date with RP research generally, before giving us a very interesting and understandable insight into her research work in Southampton. All in all, this was a particularly enjoyable and entertaining meeting, and it was a shame that so few people came along. We will be holding collections at the Marks & Spencer/Sainsbury's superstores in Hedge End on 14 July, in Bitterne on 1 September, and in Romsey on 29 September. We would welcome some extra help to shake the cans, so if you could spare an hour or two, then please do let us know. Another date for your diary is Saturday 22 September, when we hold our Stride for Sight, once again from the Osborne View in Hill Head to Lee-on-the-Solent and back. This walk has always been thoroughly enjoyed by everyone who has previously taken part, and we'll bring you more details in the next issue of "Look Forward". If you would like to contact us, then please phone 023 80476894, or email hampshirebranch@ rpfightingblindness.org.uk. www.rpfightingblindness.org.uk
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BRANCHES
VLR Programme Update We are delighted that our Voluntary Local Representative programme is becoming increasingly popular; some of our volunteers have already started to get some fabulous results from the communities in which they work.
hospitals and local Associations. Full training will be given; our next training day will be taking place in London on Friday 14 September. Another training session will take place in Scotland in the autumn for our friends north of the border.
However, the charity is keen to add to this group, and would like to hear from anyone who is willing to give talks and presentations, represent the charity at events and raise awareness of our services through
If you would like to find out more about the programme, please contact Julie Child, our Senior Fundraiser, on 01280 821334 or email julie@rpfightingblindness.org.uk
Volunteering We are looking for some more female volunteers who would like to get involved in this service. Ideally, we need Mums who have RP and young children and Mums whose children have RP. The only commitment is to call someone once a month and have a friendly chat, though full training will be given. If you would like to know more please contact Carole Holmes on 01253 404194 or email carolejholmes@googlemail.com 22
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We have recently managed to recruit some linguists to the team; we now have befrienders that speak Hindi, Punjabi, Urdu and Arabic. If you would like to be matched to someone in this group, please call the helpline on 0845 123 2354.
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FUNDRAISING
Stars of Our Community
Rugby Music Festival, on 18th August, is a day long celebration of live music, featuring 16 bands, singers and dance groups. A range of local acts are joined at the town centre event by two guest stars, the very talented Lucy Taylor who has RP herself, as well as up and coming Sophie (pictured), who is playing the festival as part of her summer tour promoting her new single “Love To Love You”.
Festival Boost for RP
Entry is free of charge and there will be charity collections throughout the day.
A music festival in Warwickshire is set to raise funds for RP this summer. www.rugbymusicfestival.org.uk
It’s so hard to pick just a few Stars of Our Community to report about each quarter, when every one of you is a STAR.
You take on amazing challenges, from organising coffee mornings to running marathons or jumping out of planes.
Without supporters who give their time and work so hard to raise funds to support our research grants, we wouldn’t be able to commit to such amazing work.
Your support is invaluable and you should all be commended for your hard work. THANK YOU. www.rpfightingblindness.org.uk
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RESEARCH
Meet The Researchers An RP Fighting Blindness Patient Information Day Kennedy Lecture Theatre, UCL Institute of Child Health, London Tuesday 18 September 2012 12noon – 6pm (provisional) with refreshments provided Many of the projects funded by RP Fighting Blindness are based at the UCL Institute of Ophthalmology. This is an opportunity to learn about the work and meet the leaders of the research teams involved. • Professor Michael Cheetham Project Leader: Potential Drug Therapies for Rhodopsin RP Professor Cheetham reports on progress and outcomes of this project funded by the Big Lottery Fund (BLF). Hear too from patient members of the Stakeholder Liaison Group that has been overseeing the project • Professor Shomi Bhattacharrya Professor Bhattacharrya discusses progress in discovering the many genes that, when faulty, result in RP • Professor Robin Ali Professor Ali presents his world-leading work on gene therapy and the application of stem cells to halting sight loss in RP • Professor Alison Hardcastle Professor Hardcastle discusses her work on X-linked RP PLACES MUST BE RESERVED IN ADVANCE To reserve your place call 01280 821334 or email michelle@rpfightingblindness.org.uk Small travel bursaries may be available for patients who would otherwise be unable to attend, email david@rpfightingblindness.org.uk for more information.
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