Look Forward issue 158 - March 2016

Look Forward Issue 158 March 2016 Registered Charity No.1153851

Inside New Trustee and Medical Advisory Board Members Page 3 40th Anniversary Appeal Update Page 4

Looking ahead to a great anniversary year!

As you’ll be aware, 2016 marks an important milestone in the history of RP Fighting Blindness - our 40th anniversary. We’re immensely proud of the work we’ve done in that time, the many research projects we’ve helped fund and the patients we’ve supported. Our 40th anniversary conference this summer will commemorate these achievements, and you’ll be pleased to learn our special anniversary research fund is growing steadily. Read on to find out more about the latest research news, upcoming patient information events and the range of fundraisers that 2016 has in store!

RP Awards Nomimations 2016 Page 5 Annual Conference 2016 Page 6 Blackpool Patient Information Day Page 9 Sighted Guide Training Page 14 Anglia Ruskin Social Research Page 17 Tough Mudder 2016 Page 24

NEWS

Letter from the Chief Executive Tina Houlihan Welcome to the latest edition of Look Forward; I can scarcely believe we are already into the third month of 2016. You won’t be surprised to learn we’ve been hard at work here at head office as we prepare for all that the year has in store - you can learn more about this later in the magazine.

2016 will see a whole host of patient information events take place, and of course the Retina International Congress, which we will report on later in the year.

This year holds huge significance for the organisation as it will mark our 40th anniversary and the progress made over this time. The 40th Anniversary Appeal research fund has gone from strength to strength, more of which you can read about on page four.

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

We’re really keen for everyone to get involved this year; check out our website for fundraising ideas.

I very much look forward to meeting many more of you at our various patient information events and fundraisers over the course of the year; it promises to be an exciting one!

Please do feel free to email me at chiefexecutive@rpfightingblindness.org.uk

should you wish to get in touch with me for any reason.

Thank you for your ongoing support.

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.

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

ORGANISATION RESEARCH NEWS

New member joins Board of Trustees We’re delighted to announce a new trustee joined the board at RP Fighting Blindness in December 2015. Dr Lucy Withington has 14 years’ experience in global financial markets; at Santander and Royal Bank of Canada. She currently leads a team developing mathematical software for trade valuation and risk management.

Lucy brings experience of project management, strategy development and her knowledge of technology to RP Fighting Blindness.

She has worked with a number of charities in volunteer roles including fundraising and assistance dog training. She is also a trained sighted guide for people with visual impairments.

Medical Advisory Board appoints new members The RP Fighting Blindness Medical Advisory Board recently appointed a new Chair, Vice-Chair and two further new members. Professor Andrew Lotery of Southampton General Hospital, appointed in October 2015, has taken over from Professor Paul Bishop as Chair, with Professor Susan Downes of Oxford Eye Hospital, originally appointed to the board in November 2009, accepting the Vice-Chair position in December 2015.

She takes over from Professor Andrew Dick.

Dr Brendan Kennedy, of University College Dublin, and Professor S. Sivaprasad, of the UCL Institute of Ophthalmology, also joined the board in December 2015.

We warmly welcome our new Medical Advisory Board Members and thank the departing members for their work over the years.

www.rpfightingblindness.org.uk

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FUNDRAISING

40th Anniversary Appeal We’re delighted to report the RP Fighting Blindness 40th Anniversary Appeal fund currently stands at £121,127 - this is an amazing achievement so far!

We’d like to thank all those who have donated to the postal appeal or have run community fundraising events in aid of this appeal.

help us reach our target this year.

You can request additional boxes for friends and family by contacting head office by phone, or by sending an email to info@rpfightingblindness.org.uk

You can donate the amount you save by calling the office on 01280 821334 and using a credit or debit card, sending a cheque made As you’ll be aware, we’re aiming to payable to RP Fighting Blindness to reach £150,000 so we can invite head office (clearly marked 40th scientists to submit their anniversary appeal) or by going to applications to our Medical your local branch of Lloyds Bank Advisory Board for an extra research and paying directly into our project to mark our 40th account. (Please put reference anniversary.

‘Appeal 40’ on the paying in slip; You’ll have noticed we’ve included a sort code 30-18-83, account number 11368368) card pop-up collection box in this issue of Look Forward – we’d like all We thank you for your ongoing our supporters to use it over the support and look forward to course of the rest of the year and to updating you about how this phase donate the contents by December.

Simply drop in a few coins from your loose change when you feel your purse or pockets getting a bit heavy and we’ll hit our fundraising target in no time!

This is an easy way to get involved and support our cause.

We hope everyone will join in and 4

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NEWS

RP Awards 2016 nominations Nominations are open for the 2016 RP Awards - if you know someone who deserves recognition for their hard work and dedication to the charity, please let us know! The RP Awards are presented in June each year at the annual conference.

The Roger Green Award for Special Contribution to the Charity This award was named for Roger Green who was a valued Trustee and had volunteered for the charity in various capacities for over 30 years. The award is made each year to someone who has contributed to our work, in any or various capacities, over a number of years.

The John George Award for Volunteering This award was initiated several years ago by Muriel George as a way of memorialising her husband John, who was a long standing and valued volunteer for the charity. It is awarded to a volunteer who really has gone that extra mile in assisting the charity.

The RP Fundraiser of the Year Award This award goes to a dedicated fundraiser each year, who has put in time and effort to help generate revenues for our work.

The Lynda Cantor Award, for the future of the charity This award is made to a person who is contributing to the development and future of the charity.

The 40th Anniversary Award A special award in honour of our 40th year which will be made to someone who has either given many years of service to the charity, or has made a similar valuable contribution.

Please send your nominations to the office addressed simply to "Freepost RP" or by email to communications@rpfightingblindness.org.uk. Please ensure nominations reach us by Friday 13th May 2016. www.rpfightingblindness.org.uk

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EVENTS

The RP Conference 2016 As last year, the RP Annual Conference 2016 will be 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.

This year’s event promises to be extra special as we mark our 40th anniversary. We hope to have displays from our long past as we look to the future.

Members, patients, family and friends, supporters, clinicians and researchers alike are welcome to attend the RP Fighting Blindness Conference on Saturday 18 June 2016 to share information, research news and everything RP. This one-day event is always an important part of the RPFB calendar, bringing together around two hundred people to hear from 6

The RP Helpline 0845 123 2354

our top speakers, learn from each other, meet the RP Fighting Blindness team, as well as socialise and catch up with old friends. The event will also incorporate the charity’s formal AGM as the last session of the day.

Members of RP Fighting Blindness are welcome to take part at no charge together with a partner or guide (although donations towards event costs are always welcome.)

Non-members are equally welcome at a cost of £30 each, which includes refreshments all day and the buffet lunch.

The full programme for the day will be announced in due course, in Look Forward and on our website.

For members and non-members alike, it is essential that places are booked, as seating and catering arrangements are made in advance. Please contact head office on 01280 821334 or email info@rpfightingblindness.org.uk to confirm the number of places required. Non-members will be invoiced.

FUNDRAISING

Team Finlay Charity Ball

Many of you will remember Team Finlay - a fundraising team which has raised many thousands of pounds for the charity through the London Marathon and other events.

The team is named after Finlay McLeod, a young man with RP, whose friends and family have come together many times to help raise funds for our work.

Their latest venture was a fundraising ball, held in November at the Richmond Hill Hotel, which included an auction where people had the chance to bid on some amazing prizes including holidays in Zimbabwe, Canada Switzerland, Majorca and Dubai, pampering and shopping days, golf experiences, and signed sports memorabilia.

The ball event was very well attended and generously supported, with the champagne reception sponsored by Savills of London. The hosts had a splendid array of auction and raffle prizes, including a very special necklace which was locked in a box; guests could purchase a key and one lucky person purchased the winning one, thus winning the beautiful jewellery.

Guests were encouraged to bid high for the auction, which many did and a large number of raffle tickets were sold too.

Roger Backhouse, longstanding RPFB trustee, attended the evening sitting at the hosts’ table. Hannah Hickman, Tina Houlihan and Michelle Carter from head office all supported the event by encouraging sales and supporting the team that had organised the ball.

The ball raised a fantastic £55,000 way above what they had hoped for.

We’d like to say a big thank you for all their amazing efforts; it truly was a fantastic night! www.rpfightingblindness.org.uk

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INFORMATION

RP Patient Information Days 2016 We’re excited to announce the schedule for this year’s Patient Information Days has been compiled. We’ll be running four events across the country over the course of 2016, which are open free of charge to those with RP, their families, health professionals and anyone else who has an interest in learning more about the condition.

We encourage delegates to take the opportunity to talk to the RPFB team and each other, as well as the scientists and speakers. We ask some of the country’s top medical researchers to present, and the Ask the Panel session which we incorporate is a unique opportunity for the audience to pose queries about the condition, or the many strands of research that are currently being explored.

The RP Patient Information Day programme was devised to bring RP information to different areas of the UK and give you and other interested parties the chance to hear first-hand from experts about research even if they couldn’t attend our annual conference in London.

The dates are: 14th May - Blackpool 6th June - Newcastle 27th July - Cambridge 15th September - Aberdeen The Patient Information Days and our annual conference are now among the largest gatherings of RP patients and professionals in the UK. 8

The RP Helpline 0845 123 2354

Further details about the RP Patient Information Day events will be made available as they are confirmed; you can learn more about the upcoming Blackpool Patient Information day over the page.

Keep up to date with upcoming events by signing up for our monthly e-Bulletins on our website.

INFORMATION

Blackpool Patient Information Day RP Fighting Blindness will be holding a Patient Information Day in Blackpool, at The Carousel Hotel, New South Promenade, South Shore, Blackpool, FY4 1RN The Carousel Hotel is offering accommodation consisting of bed and breakfast either Friday 13th or Saturday 14th May 2016 with rates as follows:-

Preliminary programme for the day: 11:30 Event desk open 12:00 Lunch available, welcome and registration 1:00 Convene, Introduction from Host 1:15 RP Fighting Blindness and the future Tina Houlihan, Chief Executive, RPFB

Single rooms @ £45.00 per room per night

1:45 The RP Genome Project and the wider context of RP research

Double or twin rooms for double occupancy @ £70.00 per room per night

Mr Stuart Ingram, Clinical Trials Manager, St Mary’s Hospital, Manchester

Double rooms for sole occupancy @ 2:15 Dr Forbes Manson, Senior £55.00 per room per night Lecturer in Ophthalmology & CoDirector of the MSc Genomic Evening meals are charged Medicine programme separately but can be taken in the restaurant. Please note rooms are 2:45 Tea and Coffee Break subject to availability.

3:15 Sofa chat show style session As it is a weekend, the hotel suggest that anyone wishing to stay over books as soon as possible as they start to get busy for the middle of May. Accommodation to be booked individually by the attendees and paid for by them on arrival at the hotel. Reservations can be made on 01253 402642 quoting reference PID. If you require assistance please contact RPFB

Host and guests TBC 3:45 Q&A Panel Session Host: TBC Panellists: Main speakers above 4:45 Closing remarks and thanks 5:00 Event close Subject to changes

www.rpfightingblindness.org.uk

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ARTICLE

Meet the team We’ve decided over the next few issues of Look Forward to introduce our readers to different members of the RP Fighting Blindness team. Some of you will of course be familiar with the various members of our staff at head office, as we run many events all over the country, but for those who are new to the organisation or perhaps rarely attend our various events, this is a great way to get to know the people on the other end of the phone.

In this issue we’re focusing on Sue Drew, Engagement Manager, and Denise Rawden, Engagement Officer. Sue and Denise run the Engagement Department, which encompasses a broad range of functions; they handle the organisation and facilitation of Patient Information Days and seminars, run the RP Helpline and associated services, represent the organisation at sector and patient events and liaise on the organisation’s behalf with many eye clinics, other charities and related service providers.

Sue Drew Engagement Manager Sue has been with the charity for seven years and joined initially as an Outreach Officer.

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The RP Helpline 0845 123 2354

As her role expanded and the management of the RP Helpline services were brought inhouse, Sue was elevated to department manager and Denise was recruited.

Sue has a personal connection with RP, as it runs in her family. Long before she was employed on a fulltime basis by RP Fighting Blindness, Sue had volunteered and fundraised tirelessly in the Cambridge area for our cause. She was chairman of the Cambridge Branch of the as-was BRPS, and was well-known within the charity.

Denise Rawden Engagement Officer Denise joined the charity three years ago, originally in the role of Helpline Coordinator.

ARTICLE

She was responsible for managing the helpline, organising regular training sessions for the volunteers who man it and the related services, and supporting Sue in other ad-hoc tasks. She still covers these areas, but was promoted to Engagement Officer earlier this year with the remit of the department growing. Denise now assists Sue in many different aspects of engagement and patient support.

develop new resources.”

You can contact either Sue or Denise at the office by calling 01280 821334 or email sue@rpfightingblindness.org.uk or denise@rpfightingblindness.org.uk.

A message fromour founder Lynda Cantor

I’m attempting to compile a list of members who joined the charity in the early days (from 1975). We do have some information from our records, but to make sure we do not “We’re really excited miss anyone out I would be grateful if you could trawl through your about the development of the memory and remind me of anyone who was with us in those early days Engagement – particularly if you also have a Department” said Sue Drew. “We want photograph. I would like to make a collage of members and in order to to ensure that all achieve this I need photos! As I relevant health have lost all my sight, I can no professionals are made aware of longer identify people from our the organisation, as well as those archived photos. The reason for my with RP and their families. We feel efforts is to mark the charity’s it’s vital we engage with RP celebration of our 40th Anniversary patients as soon as possible after Year and, if I receive enough diagnosis - resources like the RP information and photos, the collage Pathway, RP Helpline and our will be displayed at the June various literature can provide Conference and will be a record for reassurance and advice. With future generations. Please contact Denise’s job role expanding I’m me through the office or by hoping we’ll be able to reach out to emailing communications@ rpfightingblindness.org.uk more people than ever before and www.rpfightingblindness.org.uk

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FUNDRAISING

BUPA London 10k 10,000 metres of pure pleasure!

The 2016 BUPA London 10,000 takes place at 10.00am on Monday May 30th 2016.

Register now for Team RP 2016 and be part of our Anniversary Team raising money for the research fund.

The Race starts and finishes in The Mall and follows a clockwise route around the City of Westminster and the City of London. Runners pass many of London’s famous sights including, Admiralty Arch, Nelson’s

Column, St Paul’s Cathedral, Mansion House, Bank of England, Leadenhall Market, The Monument, Millennium Bridge, Tate Gallery, Cleopatra’s Needle, London Eye, Big Ben, Houses of Parliament and Westminster Abbey. It is also hoped that Buckingham Palace will act as the backdrop for both the start and finish.

To take part, all you need to do is raise a minimum of £200 for RP Fighting Blindness. Please see the registration forms on our website or call us for further information.

Support RP Fighting Blindness by taking part in our 2016 Superhero Run! Thousands of heroes will descend upon Regent’s Park on Sunday 15th May in a bid to raise funds for their chosen charity in the Do it for Charity Superhero Run. Now is your chance to join them!

event is all about the taking part, not the winning. No previous experience is required and with a bit of training, the 5km or 10km distance should easily be within your capabilities!

We’re looking for 25 RP Fighting Blindness supporters to run for us this year dressed as a superhero would you like to take part?

All you need to do is pledge to raise £100 for RP Fighting Blindness and reserve your place by completing the registration form on our website! Please call or email us for further information.

Whether you run, jog or walk - this 12

The RP Helpline 0845 123 2354

RESEARCH

RP patient able to read the time thanks to retinal implant Many of you will have seen the news coverage in early January about a patient who was the first in the UK to receive an advanced retinal implant; she has been able to read the time for the first time in more than five years.

A documentary, Trust me I’m a Doctor, was broadcast on the BBC about her procedure.

implanted for up to a year with the first generation device in order to see if it worked as part of a multicentre study.

Although the first chip was not designed for permanent use, the positive results from the initial study led to further developments of the chip in order to make it robust enough to last for an Surgeons at the Oxford Eye Hospital estimated four to six years. The first chip was not intended to be a at John Radcliffe Hospital permanent device and lasted up to implanted a tiny electronic chip at a year. the back of Rhian Lewis’s retina in her right eye as part of ongoing Rhian is the first patient outside of NHS-funded research of the Germany to be implanted with this technology. It was funded by the second generation device. A total of National Institute for Health six patients will be taking part in Research (NIHR) Invention for the latest trial at the John Radcliffe Innovation (i4i) programme in partnership with Retina Implant AG Hospital. and the NIHR Oxford Biomedical Professor Robert MacLaren, who is Research Centre. leading the trial, said: “Restoring sight to the blind using an The retinal implant as a treatment electronic device presents huge for retinitis pigmentosa has been challenges for the technology, the tested in Oxford since 2012 and surgery and above all, the patient. during this time the hospital has But at the same time, we know the worked in close partnership with huge potential benefit if we can get Retina Implant AG to develop the it right. I am delighted that the trial technology with the hope that it will one day be ready for use across has started so successfully with the NHS. Initially six patients were the excellent results we have had www.rpfightingblindness.org.uk

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ARTICLE

Guide Training Would you like your friends and family to have a better understanding of your eye condition, and have more confidence guiding you?

Do you have a friend or family member who is blind or partially sighted? Would you like to have a greater understanding of their eye condition and the techniques to guide them effectively?

If so, Guide Dogs’ My Guide Friends and Family training can help! They can provide free, bespoke training for friends and family members tailored specifically to your needs.

The training is part of the My Guide service provided by Guide Dogs, and consists of a basic introduction to vision impairment awareness, and sighted guiding techniques. It can be carried out in your home, or with a group of other people with sight loss and their friends and family.

The session will make you more confident that your family understands your eye condition. As friends and family, you can be confident you’re providing the best support possible.

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The RP Helpline 0845 123 2354

Rebecca’s story Rebecca has been slowly losing her sight due to RP. “My vision has recently taken a dip and I have had to start addressing the whole sight loss issue head on. With around five degrees of tunnel vision, I really couldn’t ignore it any longer!”

Rebecca had to adapt almost everything she does such as how she crosses the road or locates items. She also needed her family and friends to change and adapt round her. “I need them to stop being so ‘sighted’ around me.

Saying things like “over there” and pointing or walking off in busy

ARTICLE

places.” This is where Friends and Family training from Guide Dogs helped Rebecca.

Guide Dogs provided special glasses to replicate Rebecca’s eye condition, which gave her family more of an idea of how life is with her vision. “The session has given them more confidence to be open about issues. It gave me a greater sense that people understand what I was going through.

“Losing your vision is much easier when those around you have the confidence to tackle issues with you.”

To discuss Friends and Family training, or any other ways that the My Guide service can help you or someone you know, please call 0845 372 7499.

Or email myguide@guidedogs.org.uk letting them know where you live. www.guidedogs.org.uk/ RP Fighting Blindness can also provide RP simulation glasses, free of charge. They can useful to give to friends, family and colleagues if explaining tunnel vision proves tricky. Please contact head office on 01280 821334 if you would like to be sent some.

RPFB Merchandise Did you know you can purchase RP Fighting Blindness merchandise online or over the phone? We have a number of items which you can buy to help support our cause, as well as raise awareness of the organisation.

We sell RP Fighting Blindness wristbands, notebooks, Christmas cards and pin badges. You can use PayPal to buy online, or call head

office on 01280 821334 and use your credit or debit card.

If you want merchandise to sell at a fundraiser you are holding, please let us know and we’ll be happy to help. Simply email michelle@rpfightingblindness.org.uk or call head office on the number above and let us know your requirements.

www.rpfightingblindness.org.uk

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RESEARCH

Retina grown in a laboratory used to treat monkeys with RP The research was carried out by scientists at the RIKEN Center for Developmental Biology in Kobe, Japan, who used human embryonic stem cells (ESCs) to grow new retinal tissue.

They then transplanted the tissue to monkeys with RP. One of the key challenges using this approach has been the new tissue forming connections.

When this new retinal tissue was transplanted to the eyes of animals with the condition, it helped them to regain their sight. The approach has already moved to human trials to treat age-related macular degeneration (AMD).

future studies in RP. The authors write: 'Although this was an introductory study of hESC-retina transplantation using primate models, we were able to characterize the maturation process of hESC-retinas in detail.

The results of the present study demonstrate the potential utility of these models in further studies of graft optimization or surgical conditions. These methods may also facilitate greater understanding and further insights from human studies.’

The team found that the new tissue made a number of new connections According to the RIKEN team the as the cells matured. Although findings could pave the way for more research is needed to test the ESC-based retinal transplants in safety of the technique before it humans. ESCs are effectively can be used in a human trial, the cellular blank slates which can develop into almost any type of cell team has demonstrated it is possible to grow retinal tissue from in the body, given the right signals stem cells and it can develop into at the right time. In order to grow new tissue for transplant, the team mature cells in the retina. used human ESCs in the lab and In addition, they add that the two coaxed them into becoming retinal monkey models developed in their cells for transplant. study could prove valuable to

There are now hopes it could also help those with RP; in the first half of the experiment, the researchers tested to see if they could successfully grow retinal tissue grafts from the human cells.

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The RP Helpline 0845 123 2354

RESEARCH

Study finds explaining blindness is a struggle A new study shows explaining their blindness to others is the biggest difficulty faced by people with retinitis pigmentosa.

the emotional impact. Until this study we knew even less about RP, which affects a much younger group of people than other forms of blindness. We found that the The research, carried out by biggest emotional problem faced by academics at Anglia Ruskin people with RP is communicating University and published in the their vision loss to others. This is journal PLOS ONE, involved 166 partly because explaining people living with the condition, which is the most common form of blindness is very difficult, but it is also made more difficult if other blindness amongst people of people do not have a good working age in the UK. understanding of vision loss The researchers asked the perhaps thinking that ‘blind’ means participants about how they deal unable to see anything at all, or with misunderstandings because of that only central vision is affected.” their visual impairment and how Tina Houlihan, our Chief Executive easily they are able to explain to commented, “We welcome these others what they can and cannot findings as the emotional aspects see. These tasks were rated as of living with a condition such as RP ‘impossible’ or ‘very difficult’ by 39% of respondents, with a further are often overlooked. We are aware that many members of the public 27% rating them as ‘moderately have misconceptions about visual difficult’. impairment and do not realise RP Dr Keziah Latham, Reader in the does not necessarily equate to full Department of Vision and Hearing blindness. We have heard about the Sciences at Anglia Ruskin frustration felt by some members University, commented “We know a of our patient group due to the lack great deal about how visual of knowledge the general public impairment affects people carrying has about such matters.” out everyday tasks, but less research has been carried out into www.rpfightingblindness.org.uk

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TECHNOLOGY

Turning an idea into reality

By Steve Holyer, RPFB member carers take us to the toilet door and unless we are on very ROOM MATE familiar terms with them, that is where we are left.

Once inside the disabled access toilet we ‘explore’ until we find what we need, first the lock on the door, then the loo, the loo roll, the flush, All that has changed now however, the wash basin, the soap dispenser, with the advent of an initiative the tap, the drier…need I say more. instigated by me and partner Helen, By the time I have done all that, with the aid of our business partner phew, then I have to find the door to Spencer. get out.

It was back in early 2014, that There had to be a better way than Helen attended a business start-up this undignified and frustrating course as she was looking to do experience. We decided to change something different when she all that and so the RoomMate was retired from her job as a Mobility developed by us to give an audio and Orientation Specialist with the description of the disabled access Vision Support Team, in Cornwall. toilet. This is how it works: At 57 and having been registered blind since 1993, I thought my days of meetings, phone calls and problem solving had been left behind when I retired on the grounds of sight loss from my role of BT satellite engineer at the Satellite Earth Station at Goonhilly in Cornwall.

Due to our our joint experiences when being out and about, an idea took form and the RoomMate was conceived.

On entering the disabled access toilet an audio announcement is triggered and the unit advises that a recorded description of the room is available, if the user is visually I am sure many partially sighted impaired and requires the readers will have found the same difficulties that I am placed in when description, they are then given the instruction to wave their hand in wanting the loo away from home; our friends or spouses, partners or front of the unit to activate.

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The RP Helpline 0845 123 2354

TECHNOLOGY

The unit is placed to the left or right of the door frame at midheight and the initial announcement advises which side of the door the unit is placed and has the addition of four sonic pings after the announcement, to guide the user to it.

There are two sets of identical phrases giving a sequenced description; the first set allows the visually impaired user to form a mental picture of the room, whilst the repeated set enables the user to navigate within the room.

the fixtures whereabouts and how they are operated - RoomMate does that for you.

The first units are being placed in a range of different environments for example, a private hospital, GP surgeries, a university, beach side toilets, a village public amenity, a community centre, a museum and a recreation ground pavilion.

It has been a long process to get this far, but now we have interest from far and wide and it looks like my life will be changed with this exciting new venture. Back to the phone calls, meetings and problem solving!

If you would like to know more about us and the RoomMate, our website is www.adiaccess.co.uk

Of course when users get used to having the RoomMate available, they will know the sequence format and can make their way to the loo whilst listening to the rest of the script.

Now there will be the information to hand to navigate around the room without having someone describe www.rpfightingblindness.org.uk

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FUNDRAISING

Isle of Wight update

By Colin McArthur, RPFB Trustee and his wife Linda Looking back at 2015, we had a good year with some extreme events; we started with our son Chris and his boss Emma Watson raising £3,053, and this was followed by David Ewen's walks on the Isle of Wight walking festival in May which bought in £2,262.

In June another of our supporters, Sammii Storey, Entertainment Manager at Whitecliff Bay Holiday Park, undertook a parachute jump and raised £1,017. In July Linda and I took part in the Three Peaks Challenge, a very tough but enjoyable event especially the "après-ski” parties, (yes there really was snow on the top of Ben Nevis, and yes some did ski, and no they didn't actually have skis) and we raised £3,411. Our son Chris also arranges quiz nights in the Mojito Bar and Grill in Pernera, Cyprus, during the winter months and last year raised £1,555.

Our grateful thanks also go to the Wonky Cafe on Whitecliff bay Beach, the Alamo Steak House in Ryde and Whitecliff Bay Holiday Park for their support throughout the year.

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The total raised was £12,383.

Our forthcoming events are: a 40th anniversary party at Whitecliff Bay Holiday Park on the 19th March; we are giving a free ticket and free buffet to everyone who is sponsored to raise £40 for the charity. For more details please visit www.justgiving.com/rpis40.

David will be looking for people to join him on his walks on the beautiful Isle of Wight in May and as always the Local Group meets on the second Monday of each month at Landguard Manor in Shanklin from 11am - 1pm.

If you’re interested in learning more about fundraising or support on the Isle of Wight, please contact Colin McArthur on 07935 747332 for further information.

FUNDRAISING

Skydive for RP! If you're looking for a fun way to raise money for RP Fighting Blindness, but not sure how to go about it, why not consider skydiving? All you have to do is raise a minimum of £395 in sponsorship, and you skydive for free!

from this exciting activity!

Fancy helping us break a world record this summer?

On 11th June, Skyline, alongside RP Fighting Blindness, will be attempting to smash all previous records for skydiving. The aim is to complete the most tandem jumps in England in 24 hours… and we need your help!

You will be jumping a tandem parachute jump, with an experienced skydiver; no Want to know more? Email experience or expertise is required. michelle@rpfightingblindness.org.uk A tandem parachute jump is if you want to discuss any aspects suitable for sighted, visually of this exhilarating fundraiser! impaired and blind people alike, so there’s nothing to hold you back

www.rpfightingblindness.org.uk

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NEWS

RP Fighting Blindness Membership We’d like to thank everyone who has renewed their RP Fighting Blindness membership for 2016.

The membership subscriptions are a vital addition to our annual revenues and help us across many different areas of our work, allowing us to plan financially for future.

For historical reasons, many of our members’ annual fees were due in January. If this applies to you and you have not yet paid, please can we ask you to send your payment with the form below or call the

office and pay over the telephone using a credit or debit card. Any cheques should be made payable to RP Fighting Blindness to the amount of £24. Of course, if you pay

by Direct Debit you do not need to take any action.

Should you have any queries about membership, please don’t hesitate to get in contact with us.

If you would like to change to Direct Debit payment, please contact the office.

We thank you for your ongoing support.

RP Fighting Blindness Membership Form

Name: Address:

Contact Telephone No.: Please make cheques payable to RP Fighting Blindness and return to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ 22

The RP Helpline 0845 123 2354

NEWS

Virgin Money London Marathon 2016 We’d like to say a big good luck to our Virgin Money London Marathon runners this year! 24 people, plus several sighted guides, will be taking part on our behalf in the race on 24th April.

Notably, RPFB trustee Roger Backhouse will be leading a group of runners in Team Blind as a Bat the team is raising money for The Gene Team Projectat the UCL

Institute of Ophthalmology. They hope to raise an impressive ÂŁ175,000 - this money will be contributing to building a programme of clinical trials.

You can support Team Blind as a Bat by sponsoring them on their Just Giving page www.justgiving.com/blindasabat2016 We hope to meet a few RPFB supporters on the day of the race watch out for our runners during the BBC live coverage!

RNIB Tax Advice Did you know that RNIB has a tax advice team who support people with sight loss across the UK with tax and HMRC related issues?

The free and confidential service, supported by HM Revenue and Customs (HMRC), provides help to individuals with claiming or transferring tax allowances such as the Blind Person's Allowance and the Marriage Allowance, queries

related to income tax, tax on savings interest, VAT relief and help with tax credits issues. They can also help you to resolve tax problems through their contacts in HMRC. Their contact details are as follows: RNIB Tax Advice Team Telephone: 0345 330 4897 or 0151 702 5721 Email: tax@rnib.org.uk

www.rpfightingblindness.org.uk

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FUNDRAISING

Tough Mudder Are you tough enough?

Everyone is welcome and we have guaranteed places!

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

If you want to raise money for RP Fighting Blindness this 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!

Tough Mudder is not a race. A Tough Mudder event is a personal challenge - the goal is simply to complete the course and you’re encouraged to help others complete too. It’s about team spirit!

Just visit www.toughmudder.co.uk, find your event and cause, join the team and take on your challenge!

By visiting the Tough Mudder website you can learn more about the events, see participant photos and get a flavour of the kinds of challenges awaiting you!

Previous participants have talked about the exhilarating challenge a Tough Mudder course represents, the team spirit and pure endurance required! We guarantee you’ll feel a huge sense of achievement upon completion!

For further information and registration forms contact either Michelle Carter at head office by calling 01280 821334, or emailing michelle@rpfightingblindness.org. uk.