Look Forward issue 153 - December 2014

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Look Forward Issue 153 December 2014 Registered Charity No.1153851

Inside RP Genome Project Page 3 Legacy Giving Page 5 Sound For Sight Page 8 Oxford Retinal Implant Trial Page 11

A busy end to a great year!

This year has seen RP Fighting Blindness go from strength to strength, with the organisation bedding in after many changes.

Since the last issue of Look Forward an amazing high profile fundraiser has taken place; the very successful Sound For Sight and the RP Genome Project has been officially launched - read on to find out more!

RAG 2015 Page 16 Three Peaks Challenge Page 17 New RPFB Ambassador Page 23 RPFB Christmas Draw Page 24

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NEWS

Letter from the Chief Executive David Head MBA Season’s greetings everyone!

I also visited our Northern Ireland group this quarter.

It was a pleasure to meet Marion I often seem McCabe and her group and to be to start my able to talk about out plans for the introductions future, and answer a few to the magazine questions. We are a disparate with “it’s been a community geographically and it’s busy time here at RP Fighting not always possible to link up Blindness”. Struggle as I have done, directly as often as we would like, I haven’t found another cliché to but we are working towards the use this time… it really has been. same shared objectives - support Fundraising events, our two for people affected and research Patient Information Days, the giving hope for the future. Next start of the RP Genome Project, year we are delivering more RP the launch of the 2015 Innovation seminars and patient information Award, lots of research news, has days than ever, we understand all been happening. All of these are how crucial good quality touched on in this issue. information is to patients.

I also attend each of our board’s meetings - they get together once every quarter - and in October I was delighted to see the board approve the appointment of Rachael Stevens as a new Trustee.

Rachael will be known to many of our readers as her RP story was featured in an earlier issue, and she has also appeared recently on Radio 2 and Radio 4 talking about her sight loss and issues faced by people with RP. 2

I wish you all a very merry Christmas and a prosperous new year.

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RESEARCH

RPFB and Fight for Sight unite to drive Inherited Retinal Dystrophy Genome Project As written about in previous issues of Look Forward, we are excited to tell readers that the RP Genome Project, as approved by our board for funding in April, was officially launched in November.

We are joining forces with Fight For Sight to drive this revolutionary project that will accelerate understanding of the genetic causes of inherited retinal dystrophies (IRD) in UK patients.

treatments.

David Head, our Chief Executive, who has been working on the development of the programme for the last 18 months commented, “It is widely considered frustrating that research teams working on gene hunting projects, or teams working The RP Genome Project is being on the development of clinical collaboratively funded by the two trials, have difficulty accessing charities to bring together four patient data; we understand there leading genetic ophthalmology are data protection considerations, research centres in the UK; but most people would encourage University of Leeds and St James and permit the sharing of their data Hospital Leeds, UCL Institute of if they knew it was going to Ophthalmology and Moorfields Eye contribute so significantly to the Hospital, Manchester Academic search for a treatment. It is also Health Science Centre and frustrating that funding for genetic Manchester Royal Eye Hospital, testing is difficult to access in and University of Oxford and Oxford some areas of the UK. We strongly Eye Hospital. The programme is believe working across the four intended to facilitate greater centres to develop a consolidated collaboration between the centres approach will help with all of this.� and the sharing of patient data We will keep you updated as the essential in the development of clinical trials and future access to project progresses. email: info@rpfightingblindness.org.uk

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Office Telephone 01280 821334

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FUNDRAISING

Securing the future Along with this issue of Look Forward, you will find our latest legacy leaflet, which launches our newest campaign to encourage our loyal supporters to leave the charity a donation in their will.

While we apologise if the distribution of the leaflet reaches you at a difficult time, we have become increasingly aware of the transformational effect that legacies have had on the charity over the years, and feel that we need to communicate this to our wider audience.

For example, legacies we have received over the last few years have enabled the charity to: • Develop the RPFB website, making information available 24 hours a day to those affected

While 74 per cent of people support UK charities, only 6 per cent leave a gift to a charity in their will. This is why we are asking you to consider leaving us a bequest when the time comes, so that you can support the organisation in the future as you have so passionately in your lifetime.

• Produce and distribute thousands of our ‘Living with RP’ DVD to newly diagnosed patients and their families

By leaving us a gift in your will after you have provided for your friends and family, you could change the future for the thousands of people affected by RP.

• Enabled the Trustees to approve larger grants that couldn’t have been funded previously, for example, the Gene Team project and the RP Genome project.

For further information regarding leaving a gift in your will, please return the form on the reverse of the leaflet or get in touch with your solicitor. www.rpfightingblindness.org.uk

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The RP Helpline 0845 123 2354

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NEWS

RP Fighting Blindness in the news!

RP Fighting Blindness has recently enjoyed some great radio coverage on the BBC. The first, aired on 14 October, on BBC Radio Two’s The Jeremy Vine Show and the second aired on 18 October, on BBC Radio Four on the Today programme.

The Jeremy Vine Show looked at the challenges faced by people with a visual impairment and white cane use as well as touching on RPFB’s recent Sound for Sight event, organised by Laura Westcott (see page eight for further details!) Rachael Stevens, RPFB trustee, Joe Churcher, RPFB member and Laura Westcott were all interviewed by Jeremy. The Today programme saw Rachael Stevens interviewed again, with member Joe Rizzo-Naudi discussing RP and white cane use.

Appearances in the press such as these are beneficial to us for a number of reasons - the most obvious of course being that we

want to make sure everyone affected by RP is aware of us and the work we do. Secondly such coverage can stimulate interest in research on a national level with the general public - once news stories have been broken about scientific advancements for example, an appetite for further updates grows, keeping us and our work in mind.

Such coverage can also encourage fundraising, with the public sometimes feeling compelled to donate, usually off the back of human interest stories and case study style pieces.

If you have the chance to help promote us in the media - perhaps through a local fundraising initiative or similar, please do let us know.

Whether it’s at a national level such as the recent BBC radio pieces, or local, we’re always keen to get our name out there and are very happy to assist you. We have seen our public profile expand massively over the past few years, with media coverage on national television, radio and the internet. We’re excited this is gaining pace but it’s easy for us to miss something, particularly in local publications - if you generate something for us, do let us know!

email: info@rpfightingblindness.org.uk

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EVENTS

Sound For Sight In October, several members of the team from the RP Fighting Blindness office went along to The Tabernacle in Notting Hill, for what turned out to be a stunning evening of music raising funds for RP research.

Sound For Sight is a great concept - the idea is a gig designed to make people think about what it is to experience music without sight, so the audience was asked to wear sight loss simulators, and the stage was darkened, and the artists were unannounced.

Times to help songwriters and composers all over the world get paid for their music. Since starting the company Soundcheque she has undertaken much charity work.

Laura then took her charity involvement to another level by losing her sight for a week to raise awareness of RP; she decided to partake in this challenge after discovering that her friend, Yvette Chivers - renowned DJ, presenter and founder of Beats Foundation has the condition.

Laura lost her sight over seven days using seven sets of simulation And what an amazing show we had! spectacles produced by Optima Organised and delivered by Laura Low Vision, starting with no Westcott of Soundcheque, the line peripheral vision and culminating in up consisted of 20 artists, a pinprick of light through a 1mm all playing just one song. From diameter hole. opera to folk to rock to soul - we had it all! Laura Westcott quit her Laura was mentored by the Chief role last year as PR Manager of The Political Correspondent of the 8

Office Telephone 01280 821334

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EVENTS

Press Association, Joe Churcher, and Denise Leigh, the headline performer of the London 2012 Paralympic opening ceremony both RPFB members.

One great highlight of the Sound For Sight event was Bryn Terfel singing My Living Would Not Be In Vain. Every act there was fantastic, and the lineup also included Ruth Brown (The Voice), Dan Gillespie (The Feeling), Denise Leigh, and Patrick Alan (The Drifters). Truth be told, we would have happily listened to a full set from any of the performers, all were brilliant. Our host for the night was the BBC’s Jeremy Vine who did a great job and has been supportive of our work for several years now.

The combination of a charity evening, wonderful talent, and a great venue meant a fantastic

atmosphere and it was a privilege to be part of it.

What is very exciting is that Laura, having arranged this fundraiser for us at short notice, is keen to talk about doing it again next year. It could even become an annual event to tie in with World Sight Day, and just imagine what we might be able to create with a year to plan each time. Watch this space!

Should you get a chance to buy tickets for next year’s event, make sure you take them up. Who knows who might appear unannounced next time!

You can listen to Insight Radio’s one hour podcast featuring highlights from the Sound For Sight concert and Laura’s audio diary by visiting http://tinyurl.com/soundforsight podcast www.rpfightingblindness.org.uk

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NEWS

Visualise Training and Consultancy - official business launch event, supporting RP Fighting Blindness Cardiff-based Visualise Training and Consultancy held a dining in the dark experience as part of its business launch, sponsored by Specsavers Cardiff, AAY Photography and The Deck Coffee House. Funds raised during the event were donated to RP Fighting Blindness. Live music, great food and champagne all contributed to a successful and busy night!

Visualise Training and Consultancy provides training and consultancy services to businesses across the UK to help them improve their knowledge and understanding of their customers with a visual impairment. It aims to improve an organisation’s awareness, knowledge and confidence when dealing with those visually impaired. It delivers accredited training, premises accessibility checks and a mystery shopper service provided by visually impaired shoppers.

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The company was created earlier this year by Managing Director Daniel Williams, himself visually impaired and an RP patient, after he noticed a lack of public awareness towards people with a visual impairment. From Daniel's experience and research he found many people were unsure how to correctly assist a person with a visual impairment or were unsure how to communicate effectively with visually impaired people. The launch of Visualise Training and Consultancy is a culmination of much hard work and determination.

We’d like to thank Daniel for thinking of us when he held his official business launch, and wish him the very best for the future! You can visit the website of Visualise Training and Consultancy at http://www.visualisetrainingandco nsultancy.co.uk

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RESEARCH

New electronic retinal implant trial at Oxford for at least 12 years and no other Prof Robert MacLaren and his team pathology in that eye at Oxford contacted us recently to help them recruit RP patients for a 5. Motivated, with a genuine second electronic retinal implant interest in being a co-researcher trial that will be starting soon, at with their team. the Oxford Eye Hospital.

In order to visit the research clinic in Oxford, the team need a GP The implant is a second generation referral letter to the Oxford Eye Hospital to see Prof MacLaren. of the sub-retinal implant These letters should posted or manufactured by Retinal Implant faxed to: AG (RIAG) which was used in the Mrs Jill Hudson first trial in Oxford.

The process is still in the early stages, and the team is still identifying a group of potential participants whom can be invited for all the screening tests. There are a number of specific inclusion and exclusion criteria to help select participants most likely to benefit from the implant, but the main ones are: 1. Aged 18 - 75 years old 2. Good general health 3. No light perception in at least one eye (or vague / non-useful light perception) due to retinitis pigmentosa 4. Previously good vision in that eye

Secretary to Prof R MacLaren Oxford Eye Hospital Level LG1, John Radcliffe Hospital Headley Way Oxford OX3 9DU Fax: 01865 234515

The GP letter should include as much information as possible, e.g. patient contact details (including phone number), a brief summary of the ophthalmic history, visual acuity, general medical health and any regular medications.

Anyone wishing to make further enquiries is welcome to email Tom Edwards, Prof MacLaren’s clinical research fellow on: bionic@eye.ox.ac.uk www.rpfightingblindness.org.uk

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RESEARCH

Argus II update NHS England confirms it is considering ‘commissioning through evaluation’ of the “bionic eye” treatment for blindness caused by RP.

The prospect of NHS funding in England of Second Sight Medical Products Inc.’s Argus® II Retinal Prosthesis System has come closer as NHS England (NHSE) confirms that following consideration by the Rare Diseases Advisory Group (RDAG) it is exploring the inclusion of Argus II in its ‘Commissioning through Evaluation’ (CtE) scheme.

groundbreaking implant which restores some functional vision.

Argus II has been under consideration by the NHS since the end of 2010. In September 2013, Second Sight announced that the NHS’s Prescribed Specialised Services Advisory Group (PSSAG) was considering the reimbursement status of Argus II. PSSAG advises the UK government whether to include treatments in the list of specialised services. This recommendation was positive and accepted by the government.

David Head, our Chief Executive commented: “Our view is that the Argus II device is reliable, safe and works well to restore some functional vision to patients who otherwise have no hope of treatment. Therefore it should be The RDAG recommendation is being readily available as a treatment option on the NHS. Leading considered by NHSE’s Clinical European counterparts have Priorities Advisory Group (CPAG).

Subject to ratification of the RDAG endorsed reimbursement schemes enabling treatment with Second recommendations to fund the Sight’s retinal implant for eligible treatment, CPAG will prepare a proposal that the NHS will pay for a blind people, and NHS England appears to have lagged behind its limited number of retinitis pigmentosa patients with profound European peers in adopting this technology.” visual impairment to receive the 12

The RP Helpline 0845 123 2354

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RESEARCH

OkuStim System The OkuStim transcorneal electrical stimulation (TES) system, developed by Okuvision, is a device that delivers weak electrical impulses to the retina, to treat adults with early to late stage retinitis pigmentosa. According to the company, the painless electronic stimulus offers the chance to positively affect the course of the disease and help preserve eyesight.

The company anticipate launch for the private sector within six months and NHS clinical use shortly afterwards.

Transcorneal electrical stimulation (TES) of the retina has been shown in research to be a possible therapeutic option for RP, to improve retinal cell viability. The effect of TES is attributed to the activation of several neuroprotective systems and factors. According to the company, TES can help to reduce the The OkuStim System comprises a degeneration of photoreceptor cells stimulation device and electrodes and prolong vision in adults with (called OkuEl) that are kept in place RP. by a frame (called OkuSpex). The OkuEl silver-coated electrode If the long-term clinical consists of two fine threads, which effectiveness can be are laid on the surface of the eye demonstrated, OkuStim has the below the pupil during treatment potential to offer a new treatment and is a single use product. option for patients with RP. OkuStim is equipped with an audio Andrew Lotery, Professor of output so that patients with Ophthalmology at Southampton advanced RP can operate the University commented, “At present device. The company also states the usefulness of this device is not that the clip-on electrode can be proven and rigorous clinical trials used by people who are visually will be needed to assess its validity. impaired. The therapy is done once So at this stage it can only be a week for 30 minutes. considered as a technology OkuStim is CE marked (2010) and requiring further assessment for RP currently in research use in the UK. rather than a proven treatment.� www.rpfightingblindness.org.uk

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NEWS

RP Patient Information Day Success In October we ran two RP Patient Information Days; one in Birmingham and one in Southampton. These days proved to be a huge success, with around 250 people attending in total.

Sponsored by Second Sight, these days informed attendees about the latest developments in RP research, as well as giving the audience a chance to ask their own questions and mingle with the scientists who spoke at the event.

by Professor Andrew Lotery, and featured presentations from Professor Robert MacLaren, Professor Andrew Webster and Yvonne Luo. As well as staff from the office, RPFB’s Chairman Don Grocott and trustees Stephen Jones, Elizabeth Graham and Colin McArthur were also in attendance.

The Birmingham event saw Professor Paulo Stanga and Janet Crookes, RPFB trustee acting as hosts, and he introduced presentations which included subjects such as genetic counselling, genetic testing, advances in retinal implant technology and developments in stem cell therapy. In addition, patient speaker Kim O’Shea spoke of her own experience as a member of the ‘retinal chip’ clinical trial, taking place at Moorfields Eye Hospital.

Bringing together patients, clinicians, medical experts and relevant speakers, the Patient Information Days run in different locations across the country so as to reach as many people as possible. These events have proved to be very popular, and are a key part of our Information & Support Services, making sure that patients We will be confirming the locations get good quality information about and dates of the 2015 Patient RP and RP research from top Information Days shortly and will clinicians and researchers. announce these in future editions Our Southampton event was hosted of Look Forward.

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RESEARCH

RPFB’s Second Innovation Award Following the success of the 2013 RP Innovation Award, which led to the charity funding Professor Lako’s important stem cell work at Newcastle University, a call was made in September for applications for our second such award, to be approved in 2015.

By making a specific grant available to a scientist or a collaborative group with a new idea to develop, we can create the opportunity for that idea to become reality and for innovative thinking to be tested.

The call has now been closed and applications for the funding are currently being considered. We look forward to announcing the successful applications in due course.

David Head, our Chief Executive, said “We should not shy away from innovative work and ideas, even if there are risks involved. After all, some of the best ideas in science Researchers were able to request funding of up to £150,000 over up to have emerged from left field three years, and the criteria for the sometimes. With this grant award we have the opportunity to look at grant meant that applications had some exciting ideas and perhaps to be “innovative” and were turn one of them into reality”. encouraged to be “collaborative”.

It is the aspiration of RP Fighting Blindness to not only progress research along established threads, but to stimulate new thinking, encourage innovative approaches and nurture ideas. Socalled seed funding can allow a scientist a little freedom from the constraints of mainstream funding.

www.rpfightingblindness.org.uk

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EVENTS

The Retinal Awareness Group (RAG) The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend Conference at the Carousel Hotel across 17 - 19 April 2015. The RAG social and activity weekend regularly attracts over 100 attendees, some excellent medical speakers and a wide range of activities.

RAG also aims to provide information and advice about living with RP, Usher’s Syndrome and many others. The next RAG is on the weekend of 17 - 19 April 2015 and anyone affected by RP and their family is welcome.

The costs per person are as follows:

Option 1

Option 2

Option 3

• Arrive Friday 17 April afternoon • Depart Sunday 19 April after lunch • Includes all RAG sessions, Friday dinner and entertainment, 2 nights bed and breakfast, Saturday dinner and entertainment, tea and coffee during breaks, and Sunday lunch.

• Arrive Saturday 18 April after lunch • Depart Sunday 19 April after lunch • Includes all later RAG sessions, 1 night bed and breakfast, Saturday dinner and entertainment, tea and coffee during breaks, and Sunday lunch.

• Single room £165 • Sharing double room £155 (PP) • Sharing Twin room £155 (PP) • Sole use of double room £175

• Single room £95 • Sharing double room £90 (PP) • Sharing Twin room £90 (PP) • Sole use of double room £100

• Attendance at Saturday medical research presentation only, plus tea/coffee, for £20. To book please email or telephone the RP Fighting Blindness office as soon as possible. Option 3 places are very limited due to the amount of space available.

A £50 deposit will secure a room (non-refundable). To book please contact the Carousel Hotel directly on 01253 402642, quoting RAG option 1

A £50 deposit will secure a room (non refundable). To book please contact the Carousel Hotel directly on 01253 402642, quoting RAG option 2

A full programme of speakers and activities will be listed online once confirmed, and published in Look Forward.

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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 inclusive and take in Mount Snowdon, Scafell Pike, and the mighty Ben Nevis.

past, 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.

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.

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.

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 end of 2015. A £100 registration fee is also payable, which is separate from the sponsorship costs.

Those who have taken part in previous RPFB fundraising challenges, and have raised their full sponsorship targets in the

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

For full details about this exciting challenge, visit the RP Fighting Blindness website, or call Michelle Carter at Head Office on 01280 821334.

email: info@rpfightingblindness.org.uk

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FUNDRAISING

Run For Us! Raise money for our work while having a great time by running for RP Fighting Blindness!

If you enjoy running and competing in running races, why not combine your passion with supporting RPFB? Join Team RP today! Sign up to Team RP and raise much needed funds for continued research into finding a treatment for RP. Many of our runners compete for us year after year across different events - testament to the fun and sense of achievement they feel when running for us. Whether you want to run solo, with a sighted guide, have RP yourself or are affected by a family member with the condition, there are a number of running events you can get involved different events open to you. in is on our website.

Registrations are open for lots of Please call Michelle or Karen at the different events in 2015 including the Silverstone Half Marathon and office on 01280 821334 for further information or email the BUPA London 10K. Further michelle@rpfightingblindness.org.uk information about the different 18

Office Telephone 01280 821334

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FUNDRAISING

Fundraise while skydiving Would you like to help fundraise for pounds becoming a freefall us, while having an amazing time parachutist. for free?

What must I do to qualify for a free jump?

All you have to do is raise ÂŁ395 (or more!) for RP Fighting Blindness by asking your friends and colleagues to sponsor you, using our specially designed sponsorship forms which you will find at the back of the information pack. Please do not be put off by this amount - if you ask everybody you know to sponsor you, you will find you can quite easily raise the minimum ÂŁ395 sponsorship and remember, every penny you raise over the minimum Skydiving is an exhilarating will be further contributing to RP experience, and you can do this Fighting Blindness and giving you while supporting our cause! the chance to make an exhilarating What does the jump involve? freefall parachute jump for FREE! Technically the jump is called a What do I do next?

'Tandem Skydive'. It is a Skydive Simply book your jump by visiting because you will be freefalling www.skylineparachuting.co.uk through the air (without the parachute deployed) for several A Tandem parachute jump is thousand feet; it is in tandem suitable for sighted, visually because you will be harnessed to a impaired and blind people alike professional parachute instructor Want to know more? Email at all times throughout the michelle@rpfightingblindness.org.uk descent. This is the only way you if you want to discuss any aspects can jump from such an altitude of this great fundraising activity. without spending thousands of www.rpfightingblindness.org.uk

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ARTICLE

Chris Goodwin - Triathlon Champion with RP

By Keith Hatter Member of Hants and Berks Local Group When I congratulated athlete Chris Goodwin on winning a medal he replied, “Which one?” This was an impressive answer for anyone, but for Hampshire County Council IT Project Manager, and regular participant in RPFB tin collections even more so, as Chris is severely sight impaired due to RP. To find out how he competes in his event, paratriathlon, in which he became European champion in June 2014 and is currently ranked 4th in the world, I interviewed him.

How are you guided when taking part?

“There are three sections: swimming for 750 metres (30 lengths), cycling over 20 kilometres and running a distance of 5 kilometres . The same guide accompanies me throughout each one. The guide must be a faster athlete than I am, because if he is competing at his limit he is 20

The RP Helpline 0845 123 2354

concentrating fully on doing so and cannot pay attention to me.

When swimming, the guide and I are tethered together by an elastic chord about a metre in length. One end is tied around my knee and the other end around the guide’s knee. I swim so that the elastic remains at the correct tension; if it becomes slack I know that I am getting too close to the guide, and if it becomes too tight then I am moving too far from him.

Cycling, you will not be surprised to learn, is on a tandem with me on the back of course, although I have been asked, in the past, whether I ride on the back or front. The nature of a tandem means that both riders contribute to its propulsion and so

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NEWS College acting as guides. Also, I train on a tread mill at Bitterne Leisure Centre in Southampton, where the device has tactile controls, enabling me to regulate my rate of working.”

How did you start your athletics career?

“I used to train with the Southampton Triathlon club, but could not take part in competitions. this section is a joint effort, and therefore my position is influenced IN 2008 VIPER (an organisation to support visually impaired athletes) by the guide’s ability. was set up by Mark Stride who For running we are linked by a rope obtained enough tandems and about 50 cm long with a loop at other equipment for about ten each end. We hold the loops around visually impaired triathletes.” our hands and fingers rather like How do you sum up your the handles of a bag.” achievements so far, and what is How often do you train, and how do next? you access training facilities?

“What an incredible year. Two “I train six days a week throughout duathlons, seven triathlons, racing the year. Three times a week, I train in five countries, one time ranked at Winchester college pool. I also number one in the world, a train at The Quays in Southampton disqualification, reclassification with The Southampton Triathlon and the chance to do it with a Club. When training I do not have a bunch of fun people. What a guide, but I can just see the dark privilege it is to ride this roller lines on the bottom of the pool. For coaster!” cycling, I have a Turbo Trainer which is a static cycling machine mounted We’re sure that all the readers of Look Forward will want to join us in on an “A” frame in my garage. I run at the Winchester track at Bar End wishing Chris good luck for his future events! with Students from Winchester www.rpfightingblindness.org.uk

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NEWS

Lincoln Freemasons Fundraising Here’s a picture of Jon Bagshaw, long-time RPFB community fundraiser, being presented with a cheque from the Worshipful Master of Excalibur Lodge of Freemasons in Lincoln with the funds raised from their race night on behalf of RP Fighting Blindness. We’d like to thank everyone who took part and thank the Freemasons of Lincoln for their support; it’s very much appreciated.

Carrots NightWalk 2014 RP Fighting Blindness once again joined Fight for Sight on the Carrots Nightwalk in September.

We’d like to say a big thank you to everyone who helped make the Carrots NightWalks in London on Friday 19th September, and in Birmingham on Friday 26 September, such a success.

The Carrots NightWalk is always a fantastic event, whichever city you

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choose to do it in, and this year’s was no different!

With walkers in two cities, we had two wonderful nights, with RPFB well-represented.

If you’re interested in joining future Carrots NightWalk events, or want to know more about how you can take part in other fundraisers, please visit the RPFB website or contact Head Office on 01280 821334.

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NEWS

RP Fighting Blindness Welcomes London Entrepreneur as Ambassador We are pleased to announce we have welcomed Seema Flower as an ambassador for our work, as the charity steps up its communications, outreach and fundraising plans for 2015.

Seema, who has RP herself, founded and runs the award winning Oxford Street hairdressing salon ColourNation.

David Head, our Chief Executive, commented “Seema is worldlywise, with experience of success and difficulties in the commercial world alongside experience overcoming the barriers and stigmas that attach to a disability.

She is well placed to represent us and understand well the need for both our support services and the hope that comes from a

successful medical research programme.”

"I'm really honoured to become an ambassador for RP Fighting Blindness,” said Seema. This will give me the opportunity to fundraise and make a contribution to finding a cure for improving vision and preventing sight loss.

I am thrilled to be in a position where I can raise awareness for people in a similar situation.

RP Fighting Blindness hopes that by talking about her experiences of life with sight loss, and about the charity’s support services and research programme, Seema will encourage more people with RP to join the charity and act as an inspiration to those with RP and supporters. The charity has grown exponentially in recent years, and it is grateful to Seema for volunteering her valuable time and experience to help represent the organisation as it expands, covering more remits than ever before. www.rpfightingblindness.org.uk

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FUNDRAISING

Christmas Prize Draw!

Time is running out to purchase your tickets for the RP Fighting Blindness Christmas Prize Draw!

You should already have been sent a book of tickets for purchasing in the summer edition of Look Forward - if you don’t wish to purchase them yourself, please do consider selling them to friends or family, or returning them to Head Office. Be fast though - we’re drawing the tickets on the 15th of December!

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!

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

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

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 15 December 2014. All ticket counterfoils must be returned by 12 December 2014.

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

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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The RP Helpline 0845 123 2354