Look Forward issue 152 - September 2014

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Look Forward Issue 152 September 2014 Registered Charity No.1153851

Inside RPFB Annual Conference Roundup Page 4 Three Peaks Challenge 2015 Page 6 DNA Sequencing Project Page 8

Encouraging News From Researchers Several different research projects showing promise The past months have seen many encouraging stories in the media about blindness research, covering both technological development and gene therapy research. We are excited to be part of some of these projects ourselves, and look forward to updating you as they progress.

The charity is already preparing for 2015, so read on to learn more about what we have planned!

Retina International Conference Roundup Page 10 Smart Glasses News Page 16 RP Genome Project Page 18 Tough Mudder Challenge Page 27 Patient Information Days Page 28

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NEWS

Letter from the Chief Executive David Head MBA It’s only a few months since I penned my last Letter from the Chief Executive, but we’ve done much in that time.

Our Annual Conference and AGM in June proved a great success, with a number of fascinating speakers and presentations; we held a Helpline Volunteer Training Weekend in August, attended the Retina International Conference in Paris and of course have been holding fundraising and awareness events across the country.

Research stories have been hitting the headlines recently - from technologies such as ‘smart glasses’, to the news that Britain will be taking a lead in genetic research, with the announcement of a project to map 100,000 complete DNA code sequences.

These are exciting times for us, and we are increasingly seeing the general public taking more interest in such research, in turn raising awareness of conditions such as RP and encouraging fundraising.

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I hope you find this bumper edition of Look Forward an interesting one - we had so much to share with you we had no choice but to add several extra pages this time! Obviously we’re unable to share everything that’s going on in here, but aim to keep you abreast of the most important news.

Don’t forget though, you can always keep up to date with our latest news on the RP Fighting Blindness website, which can be found at www.rpfightingblindness.org.uk Should you have any news or think of anything you think we should cover in the next edition of Look Forward, please email our Communications Officer Thomas O’Neill on tom@rpfightingblindness.org.uk with your suggestions.

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NEWS

National Raffle Tickets With your last edition of Look Forward you received ten of our National Raffle tickets. We’ve already seen many of these have been purchased, raising thousands of pounds for the charity’s work; thank you to all those who have already taken part, or sold them to friends and family. The National Raffle, which will be drawn in December, is an important fundraiser for the charity and offers some great prizes!

1st Prize – £200 of High Street vouchers, as chosen by the winner 2nd Prize – £100 of High Street vouchers, as chosen by the winner 3rd Prize – £50 of High Street vouchers, as chosen by the winner Plus other exciting prizes!

If you want to buy more tickets, please contact us on 01280 821334, but if you don’t intend to either buy or sell your raffle tickets on, please do send them back to us, so we can sell to others.

Retinal Awareness Group (RAG) meeting 2015 The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend conference at the Carousel Hotel across 17 - 19 April 2014.

many others. The cost per person for a double or twin room is £155, which includes two nights’ bed, breakfast, evening meal, lunch on Sunday and servings of tea and The RAG social and activity coffee over the weekend. A full weekend regularly attracts over 100 programme of speakers and attendees, some excellent medical activities will be made available, speakers and a wide range of once confirmed, on the RP Fighting activities. RAG also aims to provide Blindness website. To book your information and advice about living place, please contact the Carousel with RP, Usher’s Syndrome and Hotel on 01253 402642. email: info@rpfightingblindness.org.uk

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EVENTS

The RP Fighting Blindness Annual Conference 2014 Saturday 20 June 2014, saw the 38th Annual Conference of the charity take place. The event, held at the prestigious Pullman Hotel in London’s Euston, proved a great success with over 150 delegates attending to hear the latest research news, meet our trustees, attend our formal AGM and hear from our guest speakers.

This one day event has long since become a key entry in the RPFB calendar; the conference is the biggest gathering of RP patients in the UK each year, and many attendees find our keynotes and guest speakers’ presentations of great personal interest.

The day was introduced by RP Fighting Blindness’ Chief Executive David Head, before the first guest 4

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speaker Annalisa D’Innella, RP patient and writer, gave the audience an insight into what has inspired her success. Following this Keith Valentine, Director of Empowerment at the Thomas Pocklington Trust gave an engaging presentation entitled Empowerment for Those Facing Sight Loss.

The RP Awards, hosted by RPFB trustee Roger Backhouse, were announced before the delegates enjoyed lunch; the RP Awards are made each year across a number of categories to members and volunteers who have gone the extra mile to assist the charity in its aims. For the full details of the nominees and award categories, please visit the RP Fighting Blindness website. This year’s winners were: • The Roger Green Award for Special Contribution to the Charity - Kate Samwell • The John George Award for Volunteering - Steve Goulden

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EVENTS • The RP Fundraiser of the Year Award - Jon Bagshaw

proved a hit, with our keynotes speakers Professors Zrenner and Lako joined by RPFB trustee • Winner of the RPFB Short Story Professor John Marshall MBE from Competition - Joe Rizzo-Naudi the UCL Institute of Ophthalmology After a delicious buffet lunch, the and Dr Rachael Pearson, also of the John Marshall Award for RP UCL Institute of Ophthalmology.

Science was presented, by the They took questions from the floor award’s namesake and RPFB about many aspects of RP research trustee, Professor John Marshall and shared their theories and MBE. Dr Rachael Pearson of the opinions about different scientific UCL Institute of Ophthalmology was developments currently underway. named winner of the award for her As is our usual format, the event research work into RP. closed with the organisation’s Following this, Professor Paul formal AGM, at which members Bishop, the head of our Medical were invited to vote upon certain Advisory Board introduced our resolutions, preceded by our medical speakers; Professor Chairman’s Conference Address.

Eberhart Zrenner, Professor of Our chairman, Mr Don Grocott, Ophthalmology at the Institute of expressed his pleasure at the Ophthalmic Research, University of number of delegates who attended Tuebingen and Professor Majlinda the conference, and reminded our Lako, Professor of Stem Cell members how far the charity has Science at the Institute of Genetic evolved from its early roots.

Medicine, Newcastle University, Overall, it was unanimously agreed ahead of their fascinating that day was a great success, presentations, Technology in the proving both factually enlightening restoration and preservation of and very enjoyable. We will be sight and Prospects for stem cell providing information about the therapy for retinal degeneration next RPFB Annual Conference, due respectively. These talks gave the to be held on 20 June 2015, closer delegates much food for thought to the time. Recordings of the ahead of the interactive question sessions from the 2014 conference and answer session that followed. are available on the RP Fighting The ever popular RP Question Time Blindness website. www.rpfightingblindness.org.uk

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FUNDRAISING

Three Peaks Challenge 2015 Would you like take part in an amazing challenge, and help raise money for RPFB at the same time?

The Three Peaks Challenge will run from 20 July to 25 July 2015 inclusive and take in Mount Snowdon, Scafell Pike, and the mighty Ben Nevis.

As the three highest peaks in England, Wales and Scotland, this represents an exciting challenge to both visually impaired and fully sighted participants alike. The total distance walked will be an estimated 26 miles with a total ascent of 9,800 feet.

are not required to pay the £100 registration fee. These previous challenges include: London Marathons, The Sahara Trek 2009, Namibia 2010, Iceland 2011, The Coast to Coast 2012, The Tandem Challenge 2013 and the Sahara Trek 2014.

Accompanying the party will be a doctor, an experienced expedition leader and David Head, RPFB’s Chief Executive. Added to these will be a local guide at each site for maximum safety.

We are looking for 40 people to join us on the challenge, with a mixture of visually impaired and fully sighted participants. The fundraising target is very achievable at £1,300; this must be paid by the The planned itinerary for the end of 2015. A £100 registration fee challenge is below: is also payable, which is separate Monday - Travel to Mount Snowdon from the sponsorship costs.

Tuesday - Scale Mount Snowdon Those who have taken part in and travel to Scafell Pike previous RPFB fundraising Wednesday - Scale Scafell Pike challenges, and have raised their full sponsorship targets in the past, Thursday - Travel to Ben Nevis 6

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FUNDRAISING

Friday - Scale Ben Nevis Saturday - Travel home The challenge will be rounded off with a celebratory meal and a chance to relax with one another before the journey back down south!

The coach will depart from London on the morning of Monday 20 July, making its way northwards towards Snowdon, stopping at several prearranged pick-up points. The exact location of these pick-up points will be confirmed in due course. The process will be reversed on the way back, at the same points.

Hotel accommodation, coach transport and all meals except evening meals will be included in the registration fee and sponsorship payment. Breakfast and packed lunches will be provided. Rooms will be twin, or double if appropriate. We would encourage people to sign up in pairs due to this, but we are happy to team people up for accommodation purposes.

Visit the RPFB website to download the Registration and Medical forms, or alternatively contact Michelle Carter at Head Office on 01280 821334.

RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.

PO Box 350 Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE)

Social Media Do you follow us on Facebook and Twitter?

Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity.

email: info@rpfightingblindness.org.uk

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RESEARCH

Project Maps 100,000 DNA Sequences A landmark project to map 100,000 complete DNA code sequences is destined to make Britain the world leader in genetic research on cancer and rare diseases, the Prime Minister announced in August. David Cameron made the prediction as he announced a package of deals worth £300 million that will secure the future of the work, expected to be completed by 2017.

Genomics England, the body set up by the Department of Health to oversee the project, and the Californian DNA sequencing technology company Illumina was unveiled by Mr Cameron last month.

Illumina, originally “spun out” by Cambridge University scientists, will invest around £162 million into the project over its lifetime.

Pilots have been set up at centres across England - including sites in Newcastle, Cambridge and London and the first genome was sequenced Nothing on the scale of the 100,000 on 30 May. The genome of a patient’s Genomes Project has ever been tumour will be scoured for attempted anywhere before. Over differences with the genetic code of the next four years, about 75,000 their healthy tissue and people with patients with cancer and rare rare diseases, usually children, will diseases, plus their close relatives, have their DNA compared with that will have their whole genetic codes, of close relatives. University or genomes, sequenced. Cancer scientists and a drug companies will patients will have the DNA of both be allowed to access the data for healthy and tumour cells mapped, their research. They argue that making up the 100,000 total. understanding DNA will soon play a Scientists expect the project to be role in every aspect of medicine from pivotal to the development of cancer to cardiology, with cancer future personalised treatments being one of the main areas the based on genetics, with the project will focus on. potential to revolutionise medicine.

Mr Cameron said: “This agreement A £78 million partnership between will see the UK lead the world in 8

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RESEARCH

genetic research within years. I am determined to do all I can to support the health and scientific sector to unlock the power of DNA, turning an important scientific breakthrough into something that will help deliver better tests, better drugs and above all better care for patients.”

for how national collaboration could be brought to bear on this problem”.

Speaking after attending the signing of the agreement at Downing Street, he said: “It is clear that genomics has enormous power to improve the diagnosis of rare diseases such as RP and that genetic discoveries will facilitate improvements in treatment and management.”

RP Fighting Blindness chief executive David Head said: “For people faced with blindness as a result of inherited retinal dystrophies, this is really important.

There are a very large number of genes, which if mutated can cause Among the genetic mutations being sight loss - perhaps 500 or more. At examined by the project are some the moment only about 200 of these of those which cause RP. Professor have been identified, and it is Graeme Black, strategic director at exactly this type of work that will the Manchester Centre for Genomic lead to the discovery of the others, Medicine, said it was a “very, very and the many different mutations exciting development” in the search that are responsible.” for a possible treatment or cure.

Dolores Conroy, director of research He is already leading the largescale RP Genome project funded by at Fight for Sight said: “It is clear RP Fighting Blindness and Fight for that this investment in genomics in the UK will make a major impact Sight to help the country’s leading not least in the vision field where centres in retinal research better there are so many rare eye diseases. collaborate to exploit advances in This funding could not only lead to genetic testing. Professor Black better screening for genes but could said that would operate in significantly speed up the conjunction with the 100,000 Genome research and was “a model development of new therapies.” www.rpfightingblindness.org.uk

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NEWS

Retina International 18th World Conference Roundup

By Stephen Jones, RPFB Trustee and RI Representative The conference, hosted and organised by Retina France, was held from 26 to 29 June in Paris.

Two business days for delegates preceded the main conference on the Saturday and Sunday (public sessions). The official delegates of RP Fighting Blindness were David Head, Chief Executive and Stephen Jones, Trustee; several other RPFB members also attended.

The Main Conference RI conferences are held once every two years and are the only international patient-focussed conferences that exist. The fact that attendance in Paris exceeded 1,000 people, drawn from more than 50 countries, indicates that strong demand exists for such events by retinal dystrophy patients and their families.

Many top scientists from around the world gave up their weekend in order to deliver papers to the conference. British scientists were very well represented amongst the 10

The RP Helpline 0845 123 2354

speakers and included Alan Bird, Robin Ali, Shomi Bhattacharya and Mike Michaelides.

It was noted that Shomi had informed one of the early RI conferences in 1984 of the discovery of the first RP gene and now, 30 years later, he gave an interesting paper on the latest position regarding gene identification. He said that the number of IRD disease-causing genes already identified exceeded 200, as shown on the Retnet website. In answer to a question from the floor, he gave an educated guess that an equal number of genes may still remain to be found.

In other words the total number of IRD disease-causing genes could be between 400 and 500. This was a higher figure than many of us had heard before and these genes will mostly be at the harder to find end of the spectrum.

Both the leading groups that have developed retinal prostheses gave presentations to the conference, i.e. Second Sight of the USA and

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NEWS therapy and stated that one of Retina Implant AG of Germany. Both the main challenges is to develop companies had patients in pharmaceutical grade vectors. attendance who had been His group will continue their implanted with the devices as part clinical trial work on RPE 65 and of clinical trials and it was very expect to start a trial on interesting to hear of their achromatopsia in 2016. Robin experiences. Nobody is pretending also gave an update on his that the devices currently available group’s work on stem cells and give anything approaching normal pointed to the hope of starting a vision but the patients all reported clinical trial in five year’s time. that what they could “see” was He emphasised the point that, better than being totally blind and whatever the treatment, to get to helped them to find their way in licensed products in the future unfamiliar surroundings and some will require pharmaceutical could identify objects on a table. A industry involvement.

Dutch patient fitted with the Retina Implant product reported that in • Robert Koenekoop of the spite of undergoing nine hours of Montreal Children’s Hospital surgery, he would have the device spoke about pharmacological fitted again if offered the chance as therapies and his work with the the extra vision had been a QLT company to develop a novel “wonderful experience”. A panel of oral retinoid tested on RPE65 and three patients fitted with Second LRAT patients. Early results Sight’s Argus II product described showed improvements in vision benefits such as being able to before a decline set in to the distinguish a pavement and road former state. Further results are edge, avoiding street furniture and expected to be published shortly. general improvements in mobility.

• Jose Sahel, Director of the Many of the papers presented at Institut de la Vision in Paris the conference focussed on the onspoke about a number of clinical going clinical trials in various parts trials in which his team are of the world which now number involved, including the MERTK more than 20. A few of the gene therapy trial in Saudi Arabia highlights included: on six patients, three of whom reported improved vision.

• Robin Ali gave an update on gene www.rpfightingblindness.org.uk

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NEWS Abstracts of the congress sessions are available at www.retina2014.com and a summary of research and clinical trials from Prof Jerry Chader’s presentation is available on the RPFB website.

speakers from a number of different countries including the USA, Ireland, South Africa and the UK (presented by David). Brian Mansfield, Deputy Research Manager of the Foundation Fighting Blindness USA gave a presentation of a recent initiative under the name Business Days My Retina Tracker which is a webbased facility where patients, and The two business days, consisting of the RI General Assembly (GA) and clinicians, can record their data.

This service is targeted not only at the Continuing Education American retinal dystrophy patients Programme (CEP), are attended only by the official delegates of the but also those from anywhere in the world. More information is available member organisations. at www.myretinatracker.org RI currently has 25 full members of which 22 were in attendance in The next RI conference will take Paris. A number of member place in July 2016 in Taiwan organisations from several other organised by Retina Taipei assisted countries which are not yet full by long-time RI member, Retina members also attended as Hong Kong. The last four RI observers. The usual GA business of conferences have been in Europe so accounts, budgets and reports was it is appropriate that the Far East is dealt with in the usual efficient way given a turn. A great effort will be

by Christina Fasser and her team. made to spread the message Christina was elected to serve throughout the region and the RP another two year term as President organisation in mainland China has (voluntary post). Steps are also already expressed strong support. being taken to establish an RI office As an indication of the Taiwanese with a paid senior executive. commitment, 96 of them were present in Paris, including a choir of The morning of the CEP was RP patients and medical students. devoted to the issue of registries and allied subjects such as genetic There is already a website in preparation for the 2016 event at testing. Experiences and http://riwc2016.org/e_taa.php approaches were described by 12

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ARTICLE

Visually Impaired Man Sets Up Blindness Consultancy Business From May 2014, Daniel Williams, aged 22, has been providing training and consultancy services to businesses across the UK to help them improve their knowledge and understanding of customers with a visual impairment.

Daniel, who has RP, had difficulty in the past coping with his visual impairment and not being able to enjoy the same experiences as his peers, such as learning to drive.

Since leaving University Daniel has worked but not sustained employment. He has experienced some negativity from former employers who sometimes thought he was less capable due to his visual impairment. These experiences motivated Daniel to set up Visualise Training and Consultancy which aims to improve organisations’ awareness, knowledge and confidence when dealing with people with a visual impairment. It delivers accredited training, premises accessibility checks and a mystery shopper

service provided by visually impaired people. It hasn’t been an easy process but Daniel shows great determination.

Daniel explained: “The last six months have been difficult, facing a range of different barriers trying to set up in business, however this didn’t stop me. There was no option for me to give up as I wanted to pursue a career that I am passionate about, which is making a difference within society for the better. I felt degraded by being labelled ‘unable to work’ - this motivated me to strive towards achieving my dreams and aspirations just like anyone else. I am determined to be successful and I will keep working to achieve success.”

We wish Daniel every success in his new business venture and feel sure many readers of Look Forward support his aims. You can visit the Visualise Training and Consultancy website at www.visualisetrainingandconsult ancy.co.uk www.rpfightingblindness.org.uk

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RESEARCH

New Treatments on the Horizon to Treat Inherited Retinal Diseases The National Institute for Health Research (NIHR) Horizon Scanning Centre (HSC), has identified 40 potential new treatments which are currently being developed for inherited retinal diseases in their latest horizon scanning exercise.

These potential treatments may be able to help thousands of patients.

Inherited retinal diseases are now the most common cause of blindness in working age adults in England and Wales and the second most common in childhood.

Currently, there is no cure or treatment.

In 2012, RP Fighting Blindness took part in the NIHR James Lind Alliance Sight Loss and Vision Priority Setting Partnership looking to set priorities for eye research. In this major consultation those with first-hand experience of sight loss (patients, relatives, carers and eye health professionals) were asked what were the most important questions they felt should be addressed by medical research.

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The top priority in relation to inherited retinal diseases was: “Can a treatment to slow down progression or reverse sight loss in inherited retinal diseases be developed?”

For the first time the NIHR has been able to respond to patient priorities by undertaking this horizon scanning exercise to identify the pipeline of possible treatments. In addition, focus groups with patients and clinical experts, facilitated by Fight for Sight, were held to draw on the knowledge of people with experience of inherited eye diseases and their views of potential treatments.

Joanna Smith, Senior Analyst at the NIHR HSC said: “We consulted clinical experts and developers, searched specialised databases and other online sources to find what is being developed. We found 40 new and emerging technologies.

This is the first time we have asked for a patient perspective on our search. Their comments gave a

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retinal dystrophies is an important piece of work and I commend Birmingham University and the NIHR on the output,” commented David Head, Chief Executive at RP Michele Acton, Chief Executive of Fighting Blindness. “It reinforces Fight for Sight said: “When we our view that we are getting ever consulted with patients, relatives, closer to treatments and to see the carers and eye health professionals sheer number of lines of research about their research priorities, we being followed up is immensely committed to taking them forward. motivating for us and for RP It is encouraging to know how much patients. It also underscores the research is going towards need for increased investment in addressing inherited eye diseases, retinal research, by the public for which there are currently no sector, institutions, commercial treatments. With further support organisations and medical research and funding these therapies and charities, and we call on all to do this.” technologies could have a major impact on people’s lives. At Fight for Sight we are funding eye research at 35 different universities and hospitals across the country.

We want to create a future everyone can see. We’re delighted that the latest NHIR HSC horizon scanning exercise is showing a range of promising treatments for inherited eye diseases.” totally different perspective in some areas to the clinical experts we spoke to but there were also some strong synergies.”

“This summary of the research taking place to tackle inherited

www.rpfightingblindness.org.uk

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RESEARCH

‘Smart glasses’ help fix failing vision Researchers from Oxford University lives”, said John Worsfold say they’ve made a breakthrough in of the RNIB. developing smart glasses for Lyn Oliver, 70, was diagnosed with people with severe sight loss.

RP in her early twenties. She can spot movement but describes her sight as ‘smudged and splattered’.

Her guide dog Jess helps her find her way around but obviously can’t convey other information about her surroundings.

The researchers at Oxford University have developed a way to enhance residual sight by Photo credit: Stephen Hicks / Oxford University developing smart glasses. They are fitted with a specially adapted 3D The glasses enhance images of camera. The images are processed nearby people and objects on to the by computer and projected in reallenses, providing a much clearer time on to the lenses - so people sense of surroundings. They have and objects nearby become bright allowed some people to see their and clearly defined. guide dogs for the first time. The Dr Stephen Hicks, from the Royal National Institute of Blind University of Oxford, who has led People says they could be the project, says they are now ready “incredibly important”. to be taken from the research “From what we’ve seen so far they setting to be used in the home. “If could offer some great you’re walking around you’re able to independence for blind and navigate doorways, and see partially sighted people to get out hazards on the floor that might trip and about and carry on normal you up. So you can become more

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RESEARCH

batch of 100 sets later this year, which will be offered to blind and partially sighted people to use in He says there has been a great their daily lives. If that goes well response from people who have they will start to produce larger worn them. “People have loved them. They remark how much they numbers over the next couple of can see now. They can see details in years. faces, they can see their own The Royal National Institute of hands. People have commented Blind People has followed the how they’ve seen their guide dog for project closely. John Worsfold from the first time. It’s a real enabler.” the RNIB says they could make a Lyn Oliver tried the latest glasses in massive difference to people’s Oxford’s covered market, a busy lives. “I think these could be enclosed space with lots of incredibly important. From what potential obstacles. Soon she found we’ve seen so far they could offer her surroundings coming into some great independence for blind focus. She said the glasses could and partially sighted people.” help in many different settings; independent and walk around with greater ease.”

“This way I could find my way to a door, around tables and out. Find the stairs and up the stairs.”

David Head, our Chief Executive, commented that it was exciting news, “The development of such The headset is still substantial, and technologies is of course hugely connected by cable to a laptop in a exciting, and we at RPFB are closely backpack. But the researchers are following the progress of smart confident in time they can be made glasses, and a number of other the size of normal glasses. technology-based projects. It’s Eventually, they say, they could be always encouraging to hear such available for the cost of a mobile news and we hope to be able to phone, saving the NHS millions of update our members on smart pounds by preventing falls. glasses, and other groundbreaking They will start making an initial technologies in the near future.”

email: info@rpfightingblindness.org.uk

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RESEARCH

Largest Ever Grant for Influential Project The RP Genome Project As was announced briefly in the summer issue of Look Forward, in April our board of trustees approved our largest ever research grant, of nearly £1.2m.

This money, £250,000 of which is coming from our funding partner Fight For Sight, will fund a consortium of four research centres to deliver The RP Genome Project. The principle behind the project is to improve data sharing and other collaboration between research teams, and in particular to ensure that data generated as a result of increased levels of genetic testing is used - with appropriate permissions - to support research work. This will support gene hunting teams in their search for the remaining genes that cause retinal dystrophy, and will also help to ensure that groups working on clinical trials have access to information to identify suitable patients, and contact with them.

Scientists at Leeds University Eye Hospital, UCL Institute of 18

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Ophthalmology in London, Manchester University Eye Hospital, and Oxford University Eye Hospital are all committed to working more closely together as a result of the programme, under the leadership of Professor Graeme Black in Manchester.

David Head, Chief Executive at RP Fighting Blindness, said “Not only is this our largest ever investment over three years - it is also the most influential project we have initiated and funded. It will influence the way that patients and patient data are handled in the future, and break down the barriers that prevent clinical genetic testing data being available to RP research teams. We are also very proud and pleased to highlight that the project is a demonstration of collaboration in action for the benefit of patients both on the funding side with us working closely with Fight For Sight, and of course on the scientific side

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RESEARCH

with four centres - perhaps more in people affected by inherited blindness and their families should the future - working together. be included as much as possible in The project is due to start in that broader project and the data October of this year and will start produced by the programme will be with the appointment of a Project ‘plugged in’ to the government Coordinator by Manchester project by the Manchester University. It will be overseen by a laboratories.

Scientific Committee and also Professor Graeme Black and his guided by a Strategic Advisory team have been funded by RP Committee, which will include Fighting Blindness for the last patient representation. decade to develop genetic testing The RP Genome Project is targeted technologies, analysis and with stimulating a ten-fold increase protocols. “The fact that this is in clinical genetic testing for culminating in a major project with inherited retinal dystrophies, and direct patient benefit is very supporting the discovery of five to significant”, said David, “It ten new retinal dystrophy genes for demonstrates how important the each of the three years of the influence of a patient organisation programme. To put this into and patient generated research context, previously projects funds can be”. designed to find one gene may have Updates on the programme’s taken two to three years and cost progress and results will be perhaps £150,000 or more. This is included regularly in future issues made possible by collaborative of Look Forward. Professor Black is working coupled with huge also presenting at the RP Patient advances in the technology used Information Day in Birmingham on for genetic testing and analysis.

October 9th this year and will The project also ties in with the undoubtedly discuss it and be government-funded 100,000 available to answer questions.

Genomes Project, which is working Places can be reserved at this free to map, in full, 100,000 individuals event by contacting Head Office by genomes. Our aspiration is that telephone, email or post. www.rpfightingblindness.org.uk

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NEWS

Blind Veteran’s Parade Honour A visually impaired veteran with RP has spoke out about how “honoured” he was to be the official standardbearer for Blind Veterans UK in this year’s Armed Forces Day celebrations.

Blind Veterans UK, as the charity cares for all vision-impaired exservicemen and women regardless of when or how they lost their sight.

Brian has received free specialist services and support from the charity since 2006, to help him and Brian Eldridge, who is 67, has RP his family adjust to life with sight and is from Chesterfield, marched loss. He said: “Blind Veterans UK has with the charity’s official standard been tremendous; they have helped during the opening parade of the me to become independent again, event in Stirling, Scotland, on June 28. despite my sight loss. The He said: “When the charity encouragement that they have given approached me and asked me to me is just brilliant; I can’t sing their become a standard-bearer, I didn’t praises enough.” have to give it much thought - I said “With their encouragement I have yes straight away. I am very proud built up my confidence and my that Blind Veterans UK asked me skills, I don’t hesitate now to go out and the fact that I am able to alone, and also I’m now able to enjoy represent the charity on Armed using my computer thanks to the IT Forces Day is a real honour. It is a training the charity has provided.” great opportunity to celebrate the The event in Stirling included a Armed Forces and to spend time parade of serving personnel, with other veterans - you still get veterans and cadets as well as that sense of camaraderie you did military-themed events and when you were in the Forces.” displays.

Brian joined the Royal Army Veterinary Corps in 1966 and served The charity is currently running it’s in Hong Kong, Germany and the UK No One Alone campaign to find the before he was discharged in 1975. It estimated 68,000-plus blind exservice men and women who, like wasn’t until later in life that he began to lose his sight due to RP. He Brian, are eligible for the charity’s services, but are not aware of it. was eligible for vital support from 20

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NEWS

Croydon Local Group Just a quick reminder to people in the Croydon area; the next Croydon Local Group meeting will be held on Saturday 04 October from 2.00pm to 4.00pm at Croydon Visual, 72 - 74 Wellesley Road, Croydon, Surrey. Free refreshments will be available. Please bring used, cleaned foil, stamps and old mobile phones to the meeting as RPFB can have these recycled for cash!

Foreign Currency Appeal Update As most of you will be aware, we have been appealing for any foreign currency lying around in a drawer or flight bag from your last holiday, and asked you to send in any old notes or coins from defunct or outdated currencies.

of the organisation, went one step further, took on the mantle in their area and appealed for foreign currency through local publications.

We want to thank them publically for this amazing effort which has raised a large amount for us!

Due to the relatively small value of each donation of coins and notes, it’s uneconomic for us to post a thank you card for each one - we would like to let everyone know however, that every coin is valued, and we appreciate your support.

If you have any old coins and notes you’d like to donate, please send them to:

This has appeal has been going very well, and has generated well over £1,000 from your generous contributions. Ron and Gina Pritchard, longstanding members

RP FCA PO Box 350 Buckingham MK18 1GZ Thanks for your support! www.rpfightingblindness.org.uk

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RESEARCH

Anglia Ruskin University Research Project The Department of Vision and Hearing Sciences at Anglia Ruskin University are recruiting people with impaired peripheral vision to take part in a research study to determine the most appropriate ways of assessing the field of vision.

The knowledge gained from the • Check your ability to see: study is intended to lead to quicker > Objects to the side (Visual and more efficient testing of visual fields) fields and management of patients > Small objects (Visual acuity) with low vision in the future. The research is funded by the College of > Faint objects (Contrast Optometrists and has been sensitivity) approved by the Anglia Ruskin > How well your eyes work University Ethics Committee. together (Binocular vision) If you decide to participate in this Your travel expenses to and from research, you would be asked to the university will be reimbursed. come to the Anglia Ruskin University Eye Clinic in Cambridge If you would like to find out more for a single two hour appointment. about participating in the study, You would be asked to do the please contact Hikmat Subhi at following tests, none of which hikmat.subhi@student.anglia.ac.uk involve touching your eyes or or on 01223 698070. putting drops into them: You can also write to Eastings 201, • Complete a questionnaire about Eastings Building, Anglia Ruskin your vision and any difficulties University, East Road, Cambridge, you may have CB1 1PT. 22

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FUNDRAISING

Virgin Money London Marathon 2015 RP Fighting Blindness enjoyed huge success at the Virgin Money London Marathon 2014 in April.

presence at the race for many years and there’s nothing she The London Marathon is a doesn’t know! Whether visually prestigious event, and a must-do impaired and running with a guide, for all people who enjoy running!

It’s a great way of raising money for fully sighted, a long-time marathon runner, or a casual runner wanting our cause, while undertaking a to up your game, this is the event fantastic personal challenge. We for you. We only have a limited have some people who run year after year for us, because the buzz number of places, so please of completing after training so hard register your interest now! is unbeatable. We want the 2015 Equally, if you have been lucky London Marathon to be our best yet enough to get a ballot place and - and we need you! would like to be part of Team RP, Any questions you have about the race, Michelle Carter is the go to lady - she’s been managing RPFB’s

drop us line on michelle@rpfighting blindness.org.uk and we will add you to our great line up!

Skydiving World Record Saturday 14 June saw hundreds of thrill-seeking participants take to the skies across the UK in an attempt to break the skydiving World Record for most number of parachuters jumping at once. We’re delighted to announce that the previous record was smashed with an incredible 323 supporters

jumping for some amazing causes, including RP Fighting Blindness.

Around £6,000 was generated in sponsorship money for the charity, with more expected in over the coming weeks. Want to be part of next year’s World Record breaking attempt? Contact Michelle Carter at Head Office for further details! www.rpfightingblindness.org.uk

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ARTICLE

The Royal National College for the Blind RNC is the UK’s leading specialist residential college for people aged 16+ who are visually impaired. With over 140 years’ experience, the College stands firm in its original aim to enable each and every student to achieve their potential and engage fully in their community.

RNC offers a wide range of qualifications and is home to the UK’s first Sports Academy for blind and partially sighted players of football, goalball, and golf. Support and teaching are provided by a dedicated and highly skilled team of specialist staff using first class resources and facilities. The college also offers a comprehensive work experience programme, together with full transitional support for students wishing to progress into work or university.

In addition to gaining valuable 24

Office Telephone 01280 821334

qualifications and experience, students and trainees learn essential independence and mobility skills, ensuring they have every opportunity to live as independently as possible and achieve their individual goals.

The College campus is fully accessible and facilities include: modern and fully inclusive teaching and learning areas, information technology equipment incorporating a full range of assistive technology, custom designed residences to allow for independent living, the Chapel arts and media centre and thePoint4 sports and leisure facility with hydrotherapy pool and spa.

RNC maintained its ‘good’ Ofsted rating during the last inspection in October 2013.

Potential students and professionals are welcome to visit the college for an informal, personalised tour. Call the Student Enquiries line on 01432 376 621, email info@rnc.ac.uk or visit the website www.rnc.ac.uk for more information about RNC and to book a tour.

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www.rpfightingblindness.org.uk

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ARTICLE

Challenge Wales: Turning the Tide Funded Sailing Opportunities for Visually Impaired Young People Challenge Wales is a 72-foot round-the-world yacht whose home port is Cardiff, South Wales.

The boat is operated by a charity; also called Challenge Wales, with the aim of teaching young people (aged 12 - 26 years) life skills through sailing.

The charity is offering fully-funded voyages that will enable visually impaired young people in South, West and North Wales to develop confidence, have the same experience as anyone else on board and give them the opportunity to make new friends. The funding covers the full cost of the voyage for the visually impaired young person along with a visually able ‘buddy’. This will allow them to work together as a team, taking part in everything from hoisting the sails to steering the boat.

Challenge Wales works with schools, groups and young people’s organisations but also offers big boat sailing experiences, a variety of sailing trips including milebuilder opportunities and RYA sailing qualifications for both young people and adults. Over the last two years it has delivered nearly 1,500 sailing days with young people, working with groups including the Air Cadets, Rotary young carers, National Autistic Society and several secondary schools from across Wales.

Challenge Wales is a charity dedicated to providing young people a chance to develop their self-esteem and skills of team working and communication.

Contact Challenge Wales on 02920 220266, email reservations@challengewales.org or visit www.challengewales.org for further information.

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FUNDRAISING

Tough Mudder 2015 If you want to raise money for RP Fighting Blindness next year while undertaking a fantastic physical challenge, look no further than Tough Mudder!

Tough Mudder is a 10-12 mile obstacle course designed by the Special Forces to test all-around strength, stamina, teamwork, and mental grit.

A number of different course types are available, in different locations across the country to test your abilities!

Everyone is welcome and we have guaranteed places!

With 16 dates and eight venues across the UK, all you need to do is choose your date, sign and return your form and get prepared.

• London West 02 & 03 May • Birmingham 30 & 31 May • Scotland Dumfries & Galloway 20 & 21 June With five further venues to be confirmed.

Interested in taking part? For a guaranteed place, we require a holding donation of £50, with a commitment to raise a minimum of £400 in sponsorship.

Further information and registration forms are available by contacting Michelle Carter at Head Office by calling 01280 821334, or emailing michelle@rpfightingblindness.org.uk. Learn more about Tough Mudder by visiting www.toughmudder.co.uk www.rpfightingblindness.org.uk

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NEWS

RP Patient Information Days Now in their fourth year, our free Patient Information Days are a highlight in the RP Fighting Blindness calendar.

These events have proved to be very popular, and are a key part of our Information & Support Services, making sure that patients get good quality information about RP and RP research from top clinicians and researchers. We are very grateful to Second Sight, which is sponsoring these events. In addition, patient speakers at both events will be presenting their own experience of retinal implant technology.

Southampton: 08 October at The Grand Harbour Hotel, West Quay Road, Southampton, SO15 1AG hosted by Prof Andrew Lotery

be hosting the Southampton event and presenting on the subject of stem cell research and prospects for stem cell therapy in retinal dystrophy.

Professor Stanga is an eminent clinician and surgeon, being Consultant Ophthalmologist and Vitreoretinal Surgeon at Manchester Royal Eye Hospital. He has been working closely with Second Sight on the development of the Argus II retinal implant and the associated surgical procedures. He will be hosting the Birmingham event and will also present on his retinal implant work.

We have secured venues that will enable us to host up to 100 delegates in each case. In 2015, assuming demand exists, we will be aiming to run similar events in the north of the country and in Scotland.

Birmingham: 09 October at The Postgraduate Centre, City Hospital, Dudley Road, Birmingham, B18 7QH Please see opposite page for hosted by Prof Paulo Stanga preliminary programmes for both days. Please be aware that this is Professor Lotery is a highly respected retinal specialist - both a subject to change. The RP Fighting researcher and a clinician, based at Blindness website will carry any amendments to programme Southampton General Hospital / University of Southampton. He will information.

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NEWS RP Fighting Blindness Patient Information Day, Southampton Wednesday October 08 2014 Supported by Second Sight Inc.

RP Fighting Blindness Patient Information Day, Birmingham Thursday October 09 2014 Supported by Second Sight Inc.

12:00

Welcome / registration / lunch

12:00

Welcome / registration / lunch

13:00

Welcome by David Head, Chief Executive, RP Fighting Blindness

13:00

Welcome by David Head, Chief Executive, RP Fighting Blindness

13:05

Welcome from Professor Paulo Stanga, Event Host

13:10

Dr Denise Williams: Genetic Counselling and the Patient Experience

13:05

Welcome from Professor Andrew Lotery, Event Host

13:10

Professor Andrew Webster: Genetics and RP

13:40

Professor Robert MacLaren: Gene Therapy as a Treatment for Retinal Dystrophy

13:40

Prof Graeme Black: Genetic Testing for Clinical Reporting and Research

14:10

Professor Andrew Lotery: Stem Cells: Prospects for Therapy

14:10

Dr Carla Mellough: Prospects for Stem Cell Therapies

14:40

Tea Break

14:40

Tea Break

15:00

Dr Yvonne Luo: Advances in Retinal Implant Technologies

15:00

15:30

Patient speaker to be confirmed

Professor Paulo Stanga: Advances in Retinal Implant Technologies

16:00

Ask The Experts, speakers’ panel for Q&A session, above speakers plus Mr Andy Fisher, Rehabilitation Specialist for Second Sight Inc.

15:30

Patient speaker to be confirmed

16:00

Ask The Experts, speakers’ panel for Q&A session, above speakers plus Mr Andy Fisher, Rehabilitation Specialist for Second Sight Inc.

16:55

Closing remarks from Professor Stanga and Mr David Head

17:00

Reception and refreshments, opportunity to talk to speakers and fellow patients

18:00

Event close

16:55 17:00

18:00

Closing remarks from Professor Lotery and Mr David Head Reception and refreshments, opportunity to talk to speakers and fellow patients Event close

www.rpfightingblindness.org.uk

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NEWS

TV documentary about Retinal Implant Surgery Optomen Television has been commissioned to produce a new documentary series for ITV and they are seeking patients who are due to receive eye surgery this year or by Spring next year.

stories of the individuals as their lives are transformed, raise awareness about the pioneering procedures available to help and the conditions that can create loss of sight/hearing/mobility.

In these three documentaries they will follow the real life journeys of people having their sight, hearing or mobility restored through pioneering operations. They intend to feature two stories in each one hour-long programme.

Optomen wants these to be honest, true accounts of these potentially life-changing chapters in your lives. If you are interested in sharing your story, please contact Angela (Producer) for a no obligation, friendly and confidential chat. Her email address is angela.arora@optomen.com or you can call on 0203 227 5940.

The aim of the series is to follow the stories of individuals going through medical procedures to restore their sight/hearing/mobility, If you’re under 18 please ask a parent / guardian to make understand what it is like to live contact first. with these conditions, follow the

RP Fighting Blindness Short Story Competition We had many entries for the first RP Fighting Blindness Short Story Competition, and the winner was announced in June. Three entries were shortlisted before the final decision was reached by our expert judges.

These were: The Last of the Yagimui by Joe Rizzo-Naudi, Milledgeville by Cynthia Morrison and Assumptions on a Train by Andra Harte. After careful thought, the winner of the Short Story Competition was announced as Joe Rizzo-Naudi for The Last of the Yagimui. Congratulations Joe! 30

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NEWS

A Thank You Following being presented with the Roger Green Award for Special Contribution to the Charity at the last Annual Conference, Kate Samwell, a long time and loyal member of the team at Head Office, wanted to convey her personal thanks for the award: I was delighted and surprised to receive the Roger Green Award for Special Contribution at this year’s RPFB Conference and very much appreciated the gifts I received.

There have been many changes

since I joined Lynda at Pond Farm House in January 1994 and it’s been both a fascinating and rewarding journey. Over the years, I have experienced friendship from the people I have come into contact with - and to be honoured in Roger’s name is truly the icing on the cake! RP research is at an exciting stage and I’m pleased to be able to continue working for the charity, albeit in a different role.

Thank you, too, to my colleagues for everything - you are a great team.

Obituary Former Chair of the then Woking and District Branch of BRPS, Dot Smith, recently wrote to tell us that Loraine Hope, a founder member of the branch, passed away peacefully on 16 July, after a long illness. She submitted the following obituary to us in memory of Loraine and the work she undertook for the charity: Loraine was the Secretary of the group for many years and her husband Bob was also the Treasurer. Loraine and Bob worked tirelessly for the charity, never missing a fundraising or social

event, before eventually retiring to the South Coast. Loraine will be remembered for her kind and caring ways, especially by members of the Woking and District Branch. She also had a great sense of humour and fun; I for one will miss her laughter. The way in which Loraine dealt with her illness over the past few years is an inspiration to all who knew her; she really was a very special person and will be sadly missed by all - especially her husband Bob and her family to whom we send our condolences. www.rpfightingblindness.org.uk

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RP Helpline and Information Services RP Fighting Blindness continues to provide support for people affected by retinitis pigmentosa at times of emotional stress and practical difficulty. The RP Telephone Helpline, Email Helpline and the Telephone Befriending Service are delivered by a team of dedicated volunteers, all of whom have experience of dealing with the condition themselves or within their family.

either have RP themselves or are related to someone with RP. This ensures users are communicating with skilled and empathetic volunteers every time. Our Telephone Helpline number is 0845 123 2354, and our Email Helpline address is helpline@rpfighting blindness.org.uk

Added to this, as many of you will be aware, the charity also provides an extensive informative website about RP, regular magazines and news bulletins, leaflets, factsheets, a film, social media and informative events, all developed to ensure people with RP have access to good quality information. We regularly distribute cards with the RP Helpline number and other contact information to hospitals and eye clinics to ensure we outreach to as many people as we can who may be The RP Telephone Helpline answers affected by RP. some 1,000 calls and the email service handles hundreds of If you would like any of our messages each year; many from informative materials yourself, or to people who would not be able to help others understand RP, please access this type of support do contact Head Office on anywhere else. The volunteers, who 01280 821334, and we’ll be happy to provide these free of charge. undertake regular training, all

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