Look Forward issue 155 - June 2015

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Look Forward Issue 155 June 2015 Registered Charity No.1153851

Inside AGM Notice to Members Page 2 Christmas Prize Raffle Draw Page 3 Annual Conference 2015 Page 4

An exciting time ahead!

We’re already halfway through 2015 and much has happened so far, with more planned!

Since the last edition of Look Forward, in Glasgow we’ve undertaken another Patient Information Day, we’ve launched the 40th Anniversary Appeal and have approved a further grant for medical research. The RP Conference and AGM is coming up, this year’s Annual Prize Draw is being launched and we have a whole host of fundraisers planned for the remainder of the year. Read on to learn more!

40th Anniversary Appeal Update Page 6 RPFB Research Grant Page 18 Virgin London Marathon Page 22 Anglia Ruskin Research Update Page 26

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NEWS

Notice to Members of RP Fighting Blindness Annual General Meeting The RP Fighting Blindness Annual General Meeting (AGM) will take place at 16:25 on Saturday 20 June 2015. All full members are entitled to attend, speak and vote at the AGM which will be at The Pullman Hotel, Euston Road, London after the RPFB Conference.

This will be the second AGM of the Charitable Incorporated Organisation (CIO) and we look forward to welcoming members to this meeting.

(b) Rachael Stevens was appointed trustee by the board since the last AGM and so retires but is standing for re-election 7. Any Other Business 8. Chairman’s closing remarks

Proxy voting Any member of the CIO may appoint another person as a proxy to exercise all or any of that member’s rights to attend, speak and vote at a general meeting of the CIO.

You can appoint someone to act on your behalf by informing RP Agenda for RP Fighting Blindness AGM Fighting Blindness in writing. This 1. Chairman’s welcome must state your name and address, 2. Introductions the identity of the person you wish 3. Apologies to elect to act for you and the 4. Annual Report and Accounts for 2014 meeting at which you are giving (a) Introduction them permission to vote on your (b) Questions from the floor behalf. (c) Resolution: to adopt the Report and Accounts for 2014 5. Resolution: To appoint Davies Mayer Barnett as auditors 6. Resolution: The Reappointment of trustees. (a) The following trustees retire by rotation and are standing for re-election: Stephen Jones Janet Crookes

Written confirmation of proxy voting must arrive by 20 June and can be posted to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ Or alternatively emailed to info@rpfightingblindness.org.uk

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FUNDRAISING

Christmas Prize Draw 2015!

As last year, we are holding our annual raffle prize draw at Christmas.

A book of ten tickets has been included in this issue of Look Forward for you to either buy yourself, or perhaps sell to friends.

There is no obligation upon you to do this, but if you choose not to get involved with this year’s raffle, we would appreciate you returning the books to us as we can sell them to other people.

Equally, if you would like more raffle tickets than we have provided, please contact Michelle Carter at head office and she will be happy to send you some! You can contact her on michelle@rpfightingblindness.org.uk or by calling 01280 821334.

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 great prizes!

The RPFB annual prize draw is always a popular event and we hope the Christmas prizes will help jolly along a few people’s festive season! We wish everyone luck and look forward to announcing the winners in December.

Please make cheques payable to RP Fighting Blindness and post payment and counterfoils to: RP Fighting Blindness, PO Box 350, Buckingham, MK18 1GZ The draw will be made at head office on Tuesday 15 December 2015. All ticket counterfoils must be returned by 12 December 2015.

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EVENTS

The RP Conference 2015 The 2015 RP Conference is being held at the Pullman Hotel on Euston Road, London. The hotel is just a few moments’ walk from both King’s Cross St Pancras and Euston stations, making it a convenient location for those travelling from afar. A buffet lunch will be provided.

In partnership with

Members, patients, family and friends, supporters, clinicians and researchers alike are welcome to attend the RP Fighting Blindness Conference on Saturday 20 June 2015 to share information, research Non-members are equally welcome news and everything RP. at a cost of £30 each, which includes refreshments all day and This one-day event is always an the buffet lunch. important part of the RPFB calendar, bringing together around For members and non-members two hundred people to hear from alike, it is essential that places are our top speakers, learn from each booked, as seating and catering other, meet the RP Fighting arrangements are made in advance.

Blindness team, as well as socialise Please contact Michelle Carter and catch up with old friends. The at Head office on event also incorporates the michelle@rpfightingblindness.org.uk charity’s formal AGM as the last or call on 01280 821334 to confirm session of the day. the number of places required.

Non-members will be invoiced.

Members of RP Fighting Blindness are welcome to take part at no This year's RP Fighting Blindness charge together with a partner or Annual Conference is being brought guide (though donations towards to you in partnership with Retina event costs are always welcome of Implant AG. We thank them for their course!) support.

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EVENTS

Conference Programme

RP Fighting Blindness Medical Advisory Board

09:00 Exhibition and registration open 09:55 Convene and Conference Welcome, Chairman of the Board, Mr Don Grocott

Developing Treatments for Retinitis Pigmentosa, Professor Robert Maclaren, Professor of Ophthalmology at the University of Oxford

10:00 Inspiration, Robert Taylor, RP patient and author of Lionheart, gives an insight into what has inspired him to publishing success 10:30 Empowering those experiencing sight loss, Niall McMurtry, Project Manager - EIRECS, Evidence and Service Impact at the RNIB 11:00

Tea and coffee break, with a chance to view the stands and chat

11:25

The RP Fighting Blindness Awards, nominations and presentations • The Lynda Cantor Founder Award for Contribution to the Future of the Charity • The John George Award for Volunteering

20 June 2015

Genetics and The UK RP Genome Project, Professor Alison Hardcastle, Professor of Molecular Genetics at UCL Institute of Ophthalmology 14:45

RP Question Time, chaired by Professor Michael Cheetham; your chance to quiz a panel of eminent researchers and clinicians. For the panel session, Professor Cheetham and our keynote speakers will be joined by Professor John Marshall, medical Trustee at RP Fighting Blindness

15:45

Tea and coffee Break, with a chance to view the stands and chat

16:20 Chairman's Conference Address, Mr. Don Grocott

• RP Fundraiser of the Year • The Roger Green Award for Special Contribution • The John Marshall Award for RP Scientist 12:15

The RPFB 40th Anniversary Launch, Rachael Stevens, Trustee, RP Fighting Blindness

12:45

Lunch Lunch is provided and the stands will remain open

13:45

Scientific and Medical Speakers, Introduced by Professor Michael Cheetham, Professor of Molecular Cell Biology at the UCL Institute of Ophthalmology and member of the

16:25 Annual General Meeting** 17:00

Event close, with closing remarks from Mr. Don Grocott

**Annual General Meeting - agenda for this session can be found on page two.

This session covers the formal business matters of the charity. Please note that though non-members are very welcome they will not be entitled to speak or vote on any resolution.

Members of the charity not attending the main conference are still able to attend this session by arriving during the preceding tea break.

Please collect your voting card on arrival.

Programme subject to amendments without notice.

www.rpfightingblindness.org.uk

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FUNDRAISING

40th Anniversary Appeal Update As you'll most likely be aware from our recent mailings and other online communications, April saw us launch the RP Fighting Blindness 40th Anniversary Appeal, in honour of our 40th Anniversary which we mark next year.

Donations have been rolling in, and currently stand at just over £30,000. This is a wonderful achievement, and we’d like to say a big thank you to everyone has contributed so far.

treatment or cure for RP. This is why it seemed apt that we should aim to make an extra grant for at least one additional research project in 2016.

Our target is £150,000, so we still have quite some way to go. If you haven’t yet donated, please do consider helping us reach our target.

The 40th Anniversary Appeal was conceived as a way of marking this important occasion with a positive outcome for our supporters, members and the charity as a whole. Every time we are able to help fund a research project, we come just that bit closer to a 6

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RP Fighting Blindness has now been funding medical research for four decades. We’re proud of the cutting edge nature of this work and that many of the UK’s leading and eminent researchers are involved in our portfolio of research projects.

The scientific community’s progress inspires us to continue and build our support. We can only do this by significantly increasing the amount of money we make available. Medical research is by its nature very expensive; this is even more the case in this era of preclinical work and clinical trials.

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FUNDRAISING Over the years, we’ve worked with many incredible research teams, each determined to drive scientific understanding and treatments for RP forward. Sadly however, we simply don’t have the funds to support them all. It’s so frustrating to decline very good science simply due to a lack of funding.

That’s where the Anniversary Research Fund comes in. By making £150,000 available we can invite scientists to submit their proposals to our Medical Advisory Board – and commit to supporting more of the best research.

We know that you’ve helped us achieve so much already, such as the Gene Team’s clinical trials.

Thank you so much. Because of the generosity of people like you RP Fighting Blindness has invested millions of pounds in research over the last four decades. We’re convinced that scientists are getting nearer to treatments because of this. By donating to the 40th Anniversary Appeal you are helping us do more than ever before in our mission to find a treatment or cure for RP.

the fundraising is progressing, you can visit our dedicated microsite at www.RPFBis40.org.uk You can donate online by visiting the dedicated microsite as mentioned above, or you can write a cheque made payable to RP Fighting Blindness and send it to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ Alternatively you can call head office and donate over the phone using your credit or debit card; please call 01280 821334.

If you want to know more about the 40th Anniversary Appeal or want to keep up to date with how www.rpfightingblindness.org.uk

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FUNDRAISING

Coins, phones, stamps, keys and cartridges!

We’d like to say a big thank you to everyone who has generously been sending in used stamps, old keys, foreign coins, defunct bank notes and spent printer cartridges to help us fund our work!

The various calls we’ve made over the past couple of years for such items, which now also includes cars, thanks to the innovative Give a Car scheme (which you can see on the back cover), have proved very fruitful and require little or no time on our part to administer.

There has been a change however as recently as earlier this year we made a call for old mobile phones, and encouraged you to contact us for a freepost envelope to send them directly to our recycling agent, who credited us for those received from RPFB members. Due to changes at Royal Mail, mobiles phones can no longer be posted in this way.

The mobiles can still be recycled, and still have a value to us. If you have a mobile phone you’d like to donate to us, please consider bringing it to any RPFB event and 8

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giving it directly to a member of staff. This includes our upcoming annual conference, Patient Information Days, RP Seminars, fundraisers like the London Marathon and other head office managed events. The same goes for the other smaller items on our list – feel free to bring along your coins or stamps, cartridges or keys, if posting them isn’t convenient.

Every time you think of us when you’re opening your post or clearing out your cupboards and you make the effort to send us such items, you really are making a difference.

Individually they may not have much value but collectively, over the years, such fundraising activity is generating thousands to help us research RP.

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.

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FUNDRAISING

RP Charity Dinner RPFB supporter Eileen Gandy recently held a charity dinner in aid of RP Fighting Blindness which had 50 attendees and included a presentation about RP and a raffle.

The evening started with a magician moving from table to table baffling the guests with his conjuring tricks, and as he entertained, the local catering college served the three course meal. The real surprise came when ten of the waiting staff suddenly began to sing in the dining room; the Ashfield School Ensemble choir, led by Elaine Guy, had been rehearsing for months to ‘flashmob’ the event. It proved a wonderful addition to the evening!

The total raised for the charity was an impressive £804. We’re very grateful to everyone who helped make the evening such a success!

Skydive for RP! Would you like to help fundraise for us, while having an amazing time? Skydiving is an exhilarating experience, and you can do this while supporting our cause!

Technically the jump is called a 'Tandem Skydive'; it is a skydive because you will be freefalling through the air (without the parachute deployed) for several thousand feet; it is a tandem however because you will be harnessed to a professional parachute instructor at all times throughout the descent. All you have to do is raise £395 (or more!) for RP Fighting Blindness by asking your friends to sponsor you and you jump for free! Please contact head office if you’d like more information about this exciting challenge!

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)

www.rpfightingblindness.org.uk

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ARTICLE

An Eye-Opener on the Clyde

By Rosie Dalton I first heard about VI-SA-GB, the Visually Impaired Sailing Association, in Yachting Monthly a few years ago when they were looking for volunteer skippers and mates. I contacted Colin Fowler, one of the founding members and inspiration behind the association, to find out more but it was nearly two years before an invitation I couldn’t refuse dropped into my inbox - VI-SA-GB were planning to run a flotilla week on the sea lochs and islands of the Clyde in April 2014.

strong winds, minimal rain and even some glorious sunshine towards the end of the week.

Originally four yachts were booked through a local charter company but VI-SA managed to find another three by the time the flotilla started from Largs. I was allocated the position of mate on a Bavaria 46, generously donated for the week by an Inverkip based charity that uses her to provide sailing opportunities on equal terms for vulnerable and less fortunate individuals. Also on board were sighted and experienced VI-SA skipper, John, midshipman Mat, a VI-SA virgin like I have sailed in Scotland twice me, and five Blind and partially before and loved it despite the miserable weather I previously had. sighted crew with experience ranging from complete novice to Obviously good visibility was not high on the agenda of requirements Day Skipper level. for the majority of the members of We were welcomed by Largs Sailing VI-SA, but I was hoping that a Club members, some of whom return trip early in the season joined the preparation and would enable me to take in the organisation for the flotilla as shore views of the mountains and valleys based volunteers; meeting and that I had only caught brief greeting people as they arrived. glimpses of through the mist and After a long drive up from the south rain previously. I was not of England, the lunch provided by VI-SA-GB and laid out by the club disappointed. April proved to have 10

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ARTICLE was greatly appreciated, and as we ate Colin demonstrated the right and wrong ways to empower and facilitate visually impaired people in a sailing environment by facilitating them to be independent and take control. He reminded us to be alert to hazards, such as anchors on bow rollers protruding onto pontoon walkways, which could be a danger for a visually impaired person.

whilst moored in the shelter of Holy Isle off Lamlash, some of the visually impaired crew took to their inflatable tenders and enjoyed rowing their sighted midshipman gently around the bay.

Back at Largs marina at the end of the week and after 120 miles of sailing, everyone - both sighted and visually impaired - felt a huge sense of achievement. For some it had been a huge learning curve, and for all it was an unforgettable experience. The week was rounded off with a gala dinner, again hosted

by Largs Sailing Club, and talk of the next VI-SA-GB flotilla in 2016!

Our visually impaired crew arrived mid-afternoon and quickly became involved with stowing the provisions on board and generally familiarising themselves with the layout of our yacht. It was amazing VI-SA-GB run a programme of to see how quickly they could safely voyages from Portsmouth Harbour navigate around the cockpit and on the South Coast of England cabins. throughout the late spring, early, The itinerary for the week took in and late summer, and also early Lochgoilhead, Rothesay and the autumn.

Kyles of Bute, Loch Fyne, and Arran with an overnight stop at Lamlash. If anyone has been inspired by our Adventure Sailing and wants to With winds of up to 40 knots and know more do get in touch! little rain, the sailing was exhilarating. The strength of the Team visa GB katabatic winds in Loch Long http://www.visa-gb.org.uk surprised even the more info@visa-gb.org.uk experienced local skippers and only Facebook: visa gb the bravest flew more than a half Twitter: @visagb furled jib. Later in the week, the conditions became more settled so, Or call: 07901573570 www.rpfightingblindness.org.uk

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RESEARCH RP Genome Project Update

New form of inherited blindness discovered Scientists from the University of Leeds, in collaboration with researchers from the Institute of Ophthalmology in London and Ghent University in Belgium, have discovered that mutations in the gene DRAM2 cause a new type of late-onset inherited blindness.

This new insight into the condition was only made possible through collaboration between UK and European institutions. In the UK, the £1.2 million RP Genome Project funded by RP Fighting Blindness and Fight for Sight, brings together leading genetic ophthalmology researcher centres in Leeds, London, Manchester and Oxford.

Results published in the American Journal of Human Genetics describe individuals from five families with a variety of DRAM2 mutations, all of which lead to loss of central vision beginning at age 30-40. Peripheral vision loss is also described in older individuals.

The light-sensing rear surface of the eye (the retina) relays 12

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visual information to the brain.

It’s a complex layered structure, with each layer of cells carrying out clearly defined functions.

DRAM2 has a role in initiating a cell-recycling process called autophagy, in which the damaged components of cells are broken down and renewed.

On discovering a link between DRAM2 mutations and inherited blindness, the authors showed that this protein is found in the retina; in the photoreceptor (light-sensitive) cells, and also at the surface of the retinal pigment epithelium (RPE) layer, where it meets the photoreceptors. RPE cells lie underneath the photoreceptors and take care of these essential cells.

“A high level of autophagy takes place in RPE due to the need for constant renewal of the photoreceptor outer segments following daily light-induced damage” says Dr Manir Ali who led the team making the initial discovery at the University of Leeds. “It is therefore likely that, in

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RESEARCH

the absence of correctly functioning DRAM2, autophagy and photoreceptor renewal is reduced, leading to thinning of the photoreceptor cell layer. Our findings suggest that DRAM2 is essential for photoreceptor survival.”

Dr Dolores M Conroy, Director of Research at Fight for Sight, said: “This is the first paper resulting from our programme to improve patient diagnosis by finding novel disease-causing genes through collaboration between research institutions and in partnership with RP Fighting Blindness. Enabling specific genetic diagnosis is a high priority for research on inherited retinal disease, as identified by the James Lind Alliance Sight Loss and Vision Priority Setting Partnership – a consultation with patients, relatives, carers and eye health professionals.”

Sue Drew, Engagement Manager at RP Fighting Blindness, said: “We welcome this first publication from the RP Genome Project and are delighted real progress is being

made. We have been convinced for years that wider research collaboration and partnership working between organisations such as our own and Fight for Sight is the way forward. We are proud to be co-funding the RP Genome Project, which represents a new way of working and progressing IRD research, hopefully paving the way for further collaboration in the sector in the future.”

The research was also supported by grants from the National Institute for Health Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology (NIHR Moorfields BRC), the Macular Society UK and the National Eye Research Centre (NERC).

El-Asrag et al., Biallelic Mutations in the Autophagy Regulator DRAM2 Cause Retinal Dystrophy with Early Macular Involvement., The American Journal of Human Genetics (2015) www.rpfightingblindness.org.uk

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ARTICLE

Laugh Out Loud (LOL)

By Stephen Goulden About a year ago fellow RPFB member Johnny Gardener and I were talking about our RP experiences and laughing about some of the situations we had gotten ourselves into because of our impaired sight.

poured water from a bucket onto him I had a brain wave; I have an old plastic dog bed, perfect I thought I can fill it with warm water!

and Eaton being Eaton went straight into the deepest, muddiest puddle. After unsuccessfully trying to get him to stand still while I

If we get enough contributions to our proposal we would like to publish them in a small book and sell them to raise funds for RPFB!

I started filling it up using a bucket; after my fifth trip I began to wonder why I was paddling in soggy grass and my make-shift bath was not filling up. Then I realised there were Johnny said “Wouldn’t it be great if tiny slits all over the bottom of the we could write a book featuring bed! I burst out laughing at the short humorous true stories written mental picture of Eaton sat there by members of RP Fighting smiling to himself at his master Blindness?" squelching through soggy grass with From the very beginning we want to a perplexed expression on his face. make it clear that our intention is If you have a funny true story to tell not to “laugh at” misfortune but and you would be happy to share it “laugh along with you” at those (anonymously if you'd rather), times, after getting over the initial please send it to: embarrassment, where you have Email: quietly giggled to yourself or fell about with side splitting laughter at stephen.goulden4@ntlworld.com or john.gedney@blueyonder.co.uk a scenario such as the following; Post: Stephen Goulden I took my crazy guide dog to my 77 Alderley Road local park for a free run; however, in Sale hindsight this was a really bad Cheshire M33 2UU move because it had been raining

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EVENTS

RP Patient Information Day RP Fighting Blindness held another RP Patient Information Day in partnership with sponsor Second Sight last month, this time in Glasgow at the The Grand Central Hotel.

The event was hosted by Professor John Marshall MBE, a familiar face to members of the charity, in his capacity as of one of our longest serving trustees.

The day featured presentations from Dr Carol Gardiner, Consultant in Clinical Genetics, Dr Roly Megaw from The University of Edinburgh and Emmanouil Tsamis from the University of Manchester.

the RPFB East of Scotland Local Group in which retinal implant patient Mrs Kim O’Shea shared her experiences, along with Andy Fisher, a VI Rehabilitation Officer.

These regular Patient Information Days and our annual conference are now among the largest gatherings of RP patients and professionals in the UK, with over 100 people attending our Glasgow event alone.

With the Patient Information Days proving such a popular inclusion in The presentations ranged from the RPFB calendar, we shall be local genetic services, to running similar events across the regenerative medicine and artificial remainder of 2015 in different parts vision. A question and answer of the UK; details will be publicised session was held as the last as they are confirmed. session of the day, so the audience RP Fighting Blindness would like to could pose their questions to some take this opportunity to thank of the expert speakers.

Second Sight for sponsoring the A session called ‘Learning to see current programme of Patient again’ was hosted by Jim McLean of Information Day events. www.rpfightingblindness.org.uk

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RESEARCH

Cells from eyes of dead 'may give sight to blind' Cells taken from the donated eyes of dead people may be able to give sight to the blind, researchers suggest. Tests in rats, reported in Stem Cells Translational Medicine, showed the human cells could restore some vision to completely blind rats.

Injecting the rods into the backs of the eyes of completely blind rats partially restored their vision. Brain scans showed that 50 per cent of the electrical signals between the eye and the brain were recovered by the treatment.

One of the researchers, Prof Astrid Limb, told the BBC what such a change would mean in people: The team at University College "They probably wouldn't be able to London said similar results in read, but they could move around humans would improve quality of and detect a table in a room. They life, but would not give enough vision to read. Human trials should would be able to identify a kettle and cup to make a cup of tea. Their begin within three years. quality of life would be so much Donated corneas are already used better, even if they could not read or to improve some people's sight, but watch." the team at the Institute for Ophthalmology, at UCL, extracted a The cells might be able to help special kind of cell from the back of patients with disorders such as macular degeneration or retinitis the eye. pigmentosa. Human stem cell trials These Muller glia cells are a type of are already taking place using adult stem cell capable of material taken from embryos. transforming into the specialised cells in the back of the eye and may However, this is ethically charged and takes several months to be useful for treating a wide range of sight disorders. In the laboratory, prepare the cells. The Muller glia cells can be ready within a week. these cells were chemically Prof Limb commented: "They are charmed into becoming rod cells more easily sourceable and very which detect light in the retina.

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RESEARCH

manager at the Medical Research Council, which funded the study, said: "This interesting study shows that Muller glial cells are It means the donated cells could be another viable avenue of exploration for cell therapy in rejected like an organ transplant.

The next step is to prepare the cells retinal diseases. as a clinical grade treatment in "It's not clear yet which approach order for human trials to begin. The will be most effective when these researchers believe it could take experimental techniques enter three years before such a trial human trials, which is why it is takes place. important to progress research easy to handle in the lab so from that perspective they're better, but they do express antigens that could induce an immune response."

Dr Paul Colville-Nash, the regenerative medicine programme

across all avenues in pursuit of a cure for sight loss."

www.rpfightingblindness.org.uk

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RESEARCH

RP Fighting Blindness awards grant for LCA research At the trustees’ meeting in April, the board of trustees, following advice from the Medical Advisory Board which is headed by Professor Paul Bishop, awarded a grant of £132, 417 over two years to Dr Jacqueline van der Spuy and her co-applicants Professors Michel Michaelides and James Bainbridge.

Dr van der Spuy, who is a lecturer at UCL Institute of Ophthalmology, will be using the grant funding to research Leber congenital amaurosis (LCA), the most severe form of inherited retinal degeneration.

polymorphic with numerous AIPL1 variations detected normally in the unaffected population. The aim of the project supported by RP Mutations in the AIPL1 gene cause Fighting Blindness is to confirm LCA, a severe retinal degeneration that AIPL1 variations detected in characterised by the impairment or LCA patients recruited at loss of vision early in life. Currently, Moorfields Eye Hospital are there is no cure or treatment for disease-causing mutations and not LCA caused by AIPL1 mutations. part of the normal variation of this However, it is possible that AIPL1gene. This will support the prospect targeted gene therapy, which of AIPL1-targeted gene involves replacement of the faulty replacement therapy in these LCA AIPL1 gene with a normal copy of patients. the gene, is a viable approach to “The grant awarded by RP Fighting rescuing vision in young LCA patients. The AIPL1 gene is highly Blindness will provide essential 18

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RESEARCH

support for my research programme, ensuring the full time dedication of a Research Associate and the means to achieve the aims of the project. The award is critical in bringing us one step closer to the reality of gene therapy for treating this devastating disease. I would like to thank RP Fighting Blindness for recognising the importance of this research and for supporting our valuable work.”

Sue Drew, Engagement Manager at RP Fighting Blindness commented, “It’s always exciting when the Medical Advisory Board agrees to fund a new project - it’s the fruition of our collective efforts, both the organisation’s staff and its amazing fundraisers, into real research.

We look forward to hearing how Dr van der Spuy and her team get on with their endeavours.”

The RP Fighting Blindness Shop Did you know you can buy a range of RP Fighting Blindness merchandise on our website?

We offer a range of different RPFB branded goods on our website, which you can buy to help raise funds for our cause and show your support for us publically.

We sell wristbands, pin badges, notebooks and now, ‘White Cane Cards’. These have been developed

with members of the charity as an easy way to explain to curious people about cane use and RP. With our upcoming 40th Anniversary, we’ll be expanding the range in our online shop, so watch out for more in 2016!

If you don’t have access to a computer, but would still like to purchase something, you can call head office on 01280 821334 and we’ll be happy to help. www.rpfightingblindness.org.uk

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ARTICLE

Anyone for tennis?

By Alan Whetherly, Advisor to the Tennis Foundation on Visually Impaired tennis Following Great Britain’s exciting Davis Cup win over the United States have you thought about having a go at playing tennis yourself? Tennis for blind and partially sighted people is one of the fastest growing inclusive sports; it’s exciting and fun and is suitable for all ages and abilities.

How is the game played?

Tennis is easily adapted to enable those with a visual impairment to play the game. It is usually played indoors on a standard tennis court or badminton court. A sponge ball with ball bearings inside is used, so a noise is made when the ball bounces. For partially sighted players the ball can bounce twice, and for totally blind players the ball can bounce three times. Standard tennis rackets are used and we play singles and doubles using standard tennis rules.

The Tennis Foundation has a number of Disability Tennis Networks across the country which work with local visually impaired sports clubs to provide local opportunities to play.

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The Disability Tennis Networks are made up of parks, clubs, indoor tennis centres and community facilities which all offer either impairment specific sessions, or can accommodate you in an existing session with the necessary equipment and specially trained coaches.

Where is it played?

There are a number of sessions taking place across the country; Glasgow, Newcastle, Manchester, York, Leeds, Cambridge, Birmingham, London, Brighton and Swansea just to mention a few!

Are there competitions?

Yes there are a number of regional competitions and there is a National tournament held in October each year.

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ARTICLE Where can I find out more about the game?

To find out more, including where your nearest session is visit the Tennis Foundation website: www.tennisfoundation.org.uk or email disability@tennisfoundation.org.uk Alternatively you can try these organisations for further information too: British Blind Sport - http://www.britishblindsport.org.uk/sports/tennis/ Metro Blind Sports Club (London based) - http://metroblindsport.org/ North East Visually Impaired Tennis Club https://www.facebook.com/NEVITennis Vision for Growth – visually impaired tennis Cambridge http://www.vision4growth.org.uk/vi-tennis-uk

www.rpfightingblindness.org.uk

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FUNDRAISING

Virgin Money London Marathon 2015 Sunday the 26th of April saw Michelle Carter, our Fundraising Events Manager, Karen Murfet, the Community Fundraising Assistant, Hannah Hickman, our Project Fundraiser and Thomas O’Neill, RPFB’s Communications Officer, set off for London, to support the charity’s Virgin Money London Marathon Runners.

The London Marathon is a key inclusion in RPFB’s calendar - not only does it generate considerable revenue for our work through our runners raising sponsorship, but it also helps promote the organisation to the general public through the media.

Steve McNicol, who runs on behalf of his son as part of ‘Team Finlay’ was interviewed on Tower Bridge live on BBC 1 and RPFB enjoyed coverage in The London Marathon Spectators’ Guide and the official London Marathon Magazine.

This year we had 21 people running for us, and collectively they’ll have raised an impressive £60,000 for their efforts. We are hugely grateful for this - running the London Marathon is no mean feat, and it takes time and dedication to train and raise sponsorship money.

The weather wasn’t quite as warm and sunny as we enjoyed last year, although it didn’t rain and some of our runners preferred the cool atmosphere! We held a Runners’ Reception after the Marathon at 22

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FUNDRAISING

The Taj Hotel in prestigious St. James’s, to meet and greet everyone personally, and to allow everyone to unwind and meet up with their families. The food, drink, massages and showers were very well received!

As well as a number of volunteers on the ground helping with the logistics and running of the Runners’ Reception, a team of sports therapists from Milton Keynes College generously gave their time for free by providing sports massages for our competitors.

Below is a list of our runners and their times - every one of them a great addition to Team RP! Darren Baker

- 5.16.26

Richard Brambley

- 4.13.23

Ashley Campbell

- 4.31.03

Lorna Campbell

- 3.28.55

Candy Crouch

- 6.13.11

Colin Dow

- 3.47.12

Phil Fitzgerald

- 5.03.11

Grava Laurentiu

- 3.10.27

Carolyn Hill

- 4.57.45

Alan Hilton

- 4.47.45

Mari Jones

- 4.46.34

Steve McNicol

- 3.47.13

Nick Read

- 4.27.29

John Rizzo-Naudi

- 3.33.20

Tim Robinson

- 3.02.03

Joe Shirley

- 4.10.16

Caroline Stephens

- 5.29.03

Charlie Whipp

- 3.30.18

Leanne Worrall

- 5.11.18

Leigh Longhurst

- 3.42.51

Jason Fernandes

- 3.49.38

If you’re interested in running for RP Fighting Blindness at the 2016 Virgin Money London Marathon, please contact Michelle Carter at head office on michelle@rpfightingblindness.org.uk.

Places are limited and are already filling up!

Once again, we’d like to say a big thank you to everyone who ran the marathon, sponsored our runners or volunteered on the day. Without you, none of it could be possible! www.rpfightingblindness.org.uk

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NEWS

Old BRPS and RP Fighting Blindness materials We are extremely fortunate in that you, our collective members and supporters, work tirelessly to help raise funds for the organisation. RP Fighting Blindness, and BRPS as was, has always benefited from a phenomenal amount of volunteer support and we are extremely grateful for this; without you all, the charity simply wouldn’t be where it is today - an internationally recognised force in RP research and patient information.

Over the years the organisation, and some supporters, have produced countless fundraising and patient information materials, bearing our name, charity number and contact information. Anything which does not have the current RPFB logo and colour scheme, plus our current charity number, must not be used.

a legal requirement. This includes, but is not limited to, headed paper, compliments slips, leaflets, tabards, badges, caps, stickers, cards, collection tins, collection buckets, banners, posters and flags.

Please return to us anything that you have which has the old number on it and we will supply new, current versions. It is essential the new charity number is universally adopted across all materials. Any t-shirts, running vests or other items of clothing or promotional materials you may have with our old logos on, please also return for us to supply you with up to date versions. If you are unsure about any of your materials and would like guidance, please do call head office on 01280 821334, and we’ll be happy to advise.

We are keen to run everything solely under the RP Fighting Blindness name so as to maintain and build further our presence in the sector Following the formal adoption of and with patient groups. Every time our new charity number (1153851) after our conversion to a Charitable the old name or logo is incorrectly used, it dilutes our position and Incorporated Organisation (CIO), it recognition. By working under one is essential that we cease using brand, everyone’s efforts are older materials displaying the previous charity number (217729), as concentrated to promote the charity.

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NEWS Obituary

Hilda May Adams, 1924 - 2015 We are sad to record the passing of Hilda Adams, RPFB member and blindness rights campaigner, aged 90. Hilda had RP, which manifested itself when she was in her early 20s and deteriorated progressively. Her blindness did not stop her running the business she started with her husband, Len, which she continued to do alone after his death in 1979, until she retired in 1986.

When she was told she was too old to learn braille, Hilda took on the authorities, even campaigning on In Touch on Radio 4, until she won the battle. In addition to this, she decided to complete her education, which had been interrupted by WWII. She was told she could not take the exams because she

couldn’t read the questions; with the aid of her MP however, Hilda took on the authorities again, secured the right to use an amanuensis and passed her GCSE, achieving grade ‘A’. She persisted until the matter reached the Secretary of State for Education and created a precedence which has benefitted many students since.

Hilda was a founder member of the Nottingham RP Society Branch and a member of the Nottinghamshire Royal Society for the Blind, now My Sight.

Hilda is succeeded by her three children, daughter Halina Neil and sons Andrew Adams and David Adams, who both also have RP.

RP Fighting Blindness Membership Reminder Have you renewed your membership of RP Fighting Blindness for this year?

If you don’t pay your RPFB membership by Direct Debit, please send a cheque or call us to pay over the phone using your credit or debit card. The annual cost of membership for the charity is now £24. www.rpfightingblindness.org.uk

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RESEARCH

Research update: Difficulties with visual activities for people with RP Dr Kez Latham, Ahoora Baranian, Dr Mat Timmis, Prof Shahina Pardhan of Anglia Ruskin University, Cambridge have kindly supplied us an update regarding research they undertook with some RPFB participants focusing on Difficulties with visual activities for people with RP. Please see below for their article:

With the help of RP Fighting Blindness members, we have recently completed two questionnaire studies at Anglia Ruskin University investigating the difficulties with visual activities that people with RP experience.

and we can bring you a summary of our findings, which we hope will be useful to all those involved in supporting, caring and providing rehabilitation for people with RP, as well as to those with RP themselves.

For the 350 people with RP who took part in the study, the most difficult visual activities related to mobility, particularly getting around outdoors and shopping, but also recreational activities such as taking part in sports and taking holidays or trips. Activities relating to work, such as applying for a job or using facilities at work, also featured in the ‘Top 10’ most difficult goals. The mobility aspects obviously reflect how RP affects peripheral vision, and highlights the necessity for availability of mobility training. It also highlights how consideration of peoples’ visual needs in the work environment needs to be a key consideration in rehabilitation services.

Many RPFB members contributed to this research by answering the questionnaires, and we would like For people with less severe visual to thank you all for your time and loss (those not registered, or enthusiasm for the project. The first study has now been published, registered as Sight Impaired), 26

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RESEARCH activities related to communicating with people, such as interacting with strangers and relationships with loved ones, were relatively more difficult than for people registered as Severely Sight Impaired. We suggest that support with the emotional and communication aspects of visual loss should be considered early in rehabilitation, and may be crucial in early adjustment to visual loss in this progressive condition.

Meanwhile, people registered Severely Sight Impaired found activities around reading and writing, such as dealing with correspondence, more difficult than those with less severe loss.

This reflects how central vision can deteriorate in more advanced RP, and results in the need for optical assistance in terms of making things bigger (such as magnifiers) and bolder (such as electronic aids, or lighting advice).

We also asked 75 people who support someone with RP how difficult they thought the person they supported found the different visual activities. In general, there was very good agreement between people with RP and their supporters around how difficult particular activities were. There

was a tendency for supporters to think that domestic chores were more difficult than people with RP did, and to think that communicating with people was a little easier than people with RP thought. Assistance for supporters of those with RP, especially with communication aspects, could therefore be important in helping both the supporters, and the people they support.

We are currently analysing the data from the second questionnaire study that RFPB members took part in, and will bring those results to you as soon as we can.

Dr Kez Latham, Ahoora Baranian, Dr Mat Timmis, Prof Shahina Pardhan. Anglia Ruskin University, Cambridge.

The paper has been published as: Latham K, Baranian M, Timmis MA, Pardhan S. Difficulties with goals of the Dutch ICF Activity Inventory: perceptions of those with Retinitis Pigmentosa and of those who support them. Investigative Ophthalmology and Visual Science, 2015, Vol.56, 2381-2391. doi:10.1167/iovs.14-16237.

You can contact the team about this research on: keziah.latham@anglia.ac.uk www.rpfightingblindness.org.uk

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Your old car can fund our research If you have an old car that you no longer need, why not put it to good use? We will collect it from you and either sell it at auction or scrap it, then give the proceeds to RP Fighting Blindness. To find out more, call us on 0207 736 4242.

9 FREE COLLECTION 9 ANY CAR 9 COUNTRYWIDE £1 million raised for charity Making a difference, one car at a time www.giveacar.co.uk

Giveacar is a non-profit social enterprise supported by over 1,000 UK charities. Giveacar Ltd, Riverbank House,

1 Putney Bridge Approach, London SW6 3JD. Registered as a Company Limited by Guarantee in England and Wales, No. 7128385.