Look Forward issue 141 - December 2011

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Look Forward Issue 141 December 2011 Registered Charity No. 271729

Inside Letter from the Chief Executive Page 2 An ‘Era of Clinical Trials’ Page 3 Researcher in the Spotlight Page 10 Local Representatives Page 12 Music as a Way of Coping Page 16

Significant Steps Clinical trials news this quarter marks significant steps forward in the worldwide fight against retinitis pigmentosa. Foundation Fighting Blindness in the USA have hailed a ‘new era of clinical trials’ and in this issue we take a look at some recent news from research teams in the UK.

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Stars of our Community Page 19 Branch News Page 20 Diary of Events Page 24

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NEWS

Letter from the Chief Executive David Head MBA Welcome to your Winter magazine.

We have had a great reception to the wider distribution of Look Forward which we did for the first time last quarter. Thank you to everybody who gave us feedback. It is very gratifying for the team here to know how well the new brand image and magazine has been received.

Once again this quarter there is a lot of research news. The emphasis on clinical trials and on treatments moving closer and closer is all very exciting. Of course, we do have to bear in mind that clinical trials are a long process – this is the case in all areas of medicine – but when the BBC 6 o’clock news carries a story about someone being treated we know that RP researchers are making real progress.

Within our office there is plenty of activity, as we plan for next year’s fundraising, outreach, and information events. We expect to have our busiest programme ever, so do please make sure you stay in 2

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touch with us. For those of you with access to the internet, signing up to our Facebook group and to our E-bulletins is the best way of keeping up to date.

Thank you all for your help in 2011 and please continue to support us next year. There are lots of ways to do this, from renewing your membership, to making a donation, to taking part in our events. There is a lot going on and all of us here want you to remain a part of it.

Season’s Greetings.

David

Founder’s Milestone RP Fighting Blindness founder and trustee Lynda Cantor MBE has just celebrated her 70th birthday. Lynda has devoted a considerable proportion of her 70 years to the charity and we would like to thank her profoundly. Lynda, we wish you the very best for your eighth decade!

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RESEARCH

An ‘Era of Clinical Trials’ The Foundation Fighting Blindness is a charity in the USA that funds research into both retinitis pigmentosa and macular degeneration. We have close historical ties with the foundation as well as current links through Retina International and of course we take a great interest in their RP work.

In a recent report, the foundation highlight the increasing number of clinical trials they support or plan to support, in fact there are 13 different projects listed including work on Stargardt Disease, the use of valproic acid and of TUDCA (synthetic bile acid), gene therapies (including for x-linked RP), and encapsulated cell technology (ECT) all of which we watch with great interest.

However, the foundation’s Chief Executive William Schmidt also makes a few observations that resonate with us here. Despite the excitement of clinical trials, we must not lose focus on the ongoing basic science and gene hunting work that is so crucial in underpinning everything else. We also need to be increasingly aware

of the need to invest in the development and retention of scientists in the field.

For readers with access to the internet the full report is available online at http://www.blindness.org In general terms, clinical trials take place over three phases. Phase 1 trials are designed to establish safety first and foremost, phase 2 trials to further confirm safety and establish efficacy and phase 3 to further establish efficacy and to confirm appropriate dosing.

Ultimately, a successful trial will lead to approval of a treatment by the FDA (in the USA) and/or the European Medicines Agency in the UK. www.rpfightingblindness.org.uk

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RESEARCH

Gene Therapy Clinical Trials for Choroideremia Commence A clinical trial to treat blindness caused by the genetic disease choroideremia has started in Oxford as part of a nationwide study.

the excitement in thinking that we have designed a genetic treatment that could potentially stop it in its tracks with one single injection.”

Prof. Seabra, who played a key role at Imperial College in identifying Patients in the trial will have a virus the gene causing choroideremia injected into their eye which has and in eliciting the mechanism of been genetically engineered to cell death in the retina, added: carry a missing gene and modified "…to offer gene replacement to enable it to infect the light treatment for these patients was sensitive cells - photoreceptors the objective of 20 years of intense that line the back of the eye. research ... this is a moment of Jonathan Wyatt, a fulfilment for us and a dream come 63 year old from true for choroideremia patients".

Bristol, was the The clinical trial is funded by the first to undergo Department of Health and the this pioneering Wellcome Trust and there are 12 surgery at the patients enrolled who will undergo Oxford Eye gene surgery treatment in one eye.

Hospital. The trial The trial is sponsored by the is led by Professor University of Oxford and includes Robert MacLaren, Professor of four NHS centres: Oxford Radcliffe, Ophthalmology at the University of Moorfields Eye Hospital, Oxford, and builds on collaborative Manchester Royal Eye Hospital and research with Professor Miguel Southampton University Hospital.

Seabra at Imperial College London.

Prof. MacLaren said, “This disease Choroideremia is a progressive has been recognised as an retinal degeneration that affects incurable form of blindness for over males and there is estimated to be a hundred years. I cannot describe over 100,000 people with the 4

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RESEARCH route and there is so much effort being put into this type of technology around the world that we can now be sure that it will lead to available treatments…”

With this particular gene therapy treatment, the gene remains in the retinal cells indefinitely and this is designed to be a one-off permanent correction of the disease. The initial trial is to assess safety and efficacy. Whilst safety appears so far to be fine, efficacy will only be proven after two years because this disease worldwide. Diagnosis is period is needed to measure any usually made in childhood and effect as retinal degeneration is leads to blindness in a patient’s very slow. Only one eye is treated as forties. This trial represents the the other is used as a control first attempt to treat the disease and the first time that gene therapy against which to assess any has been directed towards the light treatment effect. However the aim sensitive photoreceptor cells of the is to go on to treat the second eye once the treatment is proven. human retina.

It is important to stress that this is a study with no commercial backers with a vested interest. RP Fighting Blindness has not funded this research work though of course much of the underlying understanding of retinitis pigmentosa has arisen as a result of our research programme over the last thirty years.

Gene therapy is suited to the eye because most currently incurable causes of blindness are genetic and correcting the genetic defect is the most logical treatment. Also only a small dose of virus is needed and the eye is relatively separate from the immune system, both of which reduce the likelihood of an immune reaction and risks.

As the news was announced, David Further information is available at Head, Chief Executive at RPFB, said www.moorfields.nhs.uk or from the on his blog “…we are on an exciting team in Oxford on 01865 234782. www.rpfightingblindness.org.uk

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RESEARCH

Approval for First Human Embryonic Stem Cell Trial in Europe Moorfields Eye Hospital in London is the site for Phase 1/2 trials to treat Stargardt's Disease.

US company Advanced Cell Technology Inc (ACT) has received clearance from the UK Medicines and Healthcare products Regulatory Agency (MHRA) to begin treating patients for Stargardt's using retinal pigment epithelium derived from human embryonic stem cells.

ACT has received similar approval from the Gene Therapy Advisory Committee, which has ethical oversight responsibility for clinical trials involving gene or stem cell therapies in the UK. "This is another important milestone for us and for the field of regenerative medicine," said Gary Rabin of ACT. "We are pleased that Moorfields Eye Hospital in London has agreed to participate as a site for this study as we continue to assess the capabilities of these cells to repair the retina and reduce the impact of these devastating eye diseases. Building international 6

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relationships around our clinical programs, such as with Professor James Bainbridge, is very important to our strategy of developing new regenerative medicine therapies."

Stargardt's affects up to 100,000 patients in the US and Europe, and causes progressive vision loss, usually starting in the teens.

Eventually, blindness results from photoreceptor loss associated with degeneration in the retinal pigment epithelium – the pigmented layer of the retina. This newly-approved clinical trial is designed to determine the safety and tolerability of RPE cells derived from stem cells following subretinal transplantation to patients with advanced Stargardt's. It is similar to the FDA-cleared US trial that started in July and will be led

by Professor James Bainbridge, consultant surgeon at Moorfields Eye Hospital.

News that the trials are to be run in the UK was warmly welcomed by Prof. Paul Bishop, Professor of Ophthalmology and Matrix Biology at Manchester Eye Hospital and Chair of the RP Fighting Blindness

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RESEARCH Medical Advisory Board. David Head, Chief Executive at RP Fighting Blindness, added "This is great news; advances in this type of technology offer the best prospects in the longer term for people facing sight loss as a result of RP.

cause for optimism in the face of what has, until now, been seen as an incurable condition."

Professor Bainbridge is well known to RP Fighting Blindness, having been involved in the clinical trials of gene therapy at the Institute of Ophthalmology over the last few years.

"It's important to bear in mind that these are trials, not generally available treatments, and we will Patients with enquiries about the have to remain patient, but it is a trial can contact the team at fantastic step forward and yet more mol.therapy@ucl.ac.uk.

FDA Approves Clinical Trial for USHSTAT Gene Therapy UshStat was developed by Oxford BioMedica and the approval follows the decision by the US Recombinant DNA Advisory Committee to approve the UshStat Phase I/IIa protocol in May.

Oregon Health and Science University’s Casey Eye Institute The US Food and Drug Administration (FDA) has approved Phase I/IIa clinical development of UshStat, a gene-based treatment for Usher syndrome type 1B.

The study will enrol up to 18 patients with Usher Syndrome type 1B at the Oregon Health and Science University’s Casey Eye Institute, Portland, Oregon. The study will be led by Professor Richard Weleber and will evaluate three dose levels for safety, tolerability and aspects of www.rpfightingblindness.org.uk

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RESEARCH biological activity. Usher Syndrome is the most common form of deafblindness and one of the most common subtypes is Usher Syndrome type 1B. The disease is

caused by a mutation of the gene encoding myosin VIIA (MY07A), which leads to progressive retinitis pigmentosa combined with a congenital hearing defect.

First Commercial Retinal Prosthesis Implanted Second Sight Medical Products, a leading developer of retinal prostheses for the blind, announced that the first ever commercial implantation of such a prosthesis was successfully completed on October 29th in Pisa, Italy. The company’s Argus II Retinal Prosthesis, which has featured several times in this magazine, was implanted by Dr. Stanislao Rizzo at the University Hospital Ophthalmic Department of Pisa, in a patient with advanced RP.

The Argus II implant is now available commercially

Argus II, which received marketing clearance in Europe earlier this year, becomes the world’s first ever 8

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commercial implant intended to restore some vision to a previously blind patient. Argus II is the company’s less invasive second generation implantable device and works by converting video images captured by a miniature camera into a series of small electrical pulses that are then transmitted wirelessly to an array of electrodes on the surface of the retina. These pulses are intended to stimulate the retina’s remaining cells resulting in corresponding perception of patterns of light in the brain which patients can learn to interpret.

Dr. Rizzo indicated that the surgery proceeded without incident, and that the patient is recovering very well. Within a week of surgery, testing of the implanted device began and the Argus II will be electronically customized for the patient, who could be using the system at home before Christmas.

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NEWS

“Membership is Critical�, say Trustees At their autumn board meeting the Trustees of RP Fighting Blindness took the opportunity to review the strategy of the charity, including the role that membership plays now and in the future.

Members have always been important in raising funds for our research work, as well as giving directly themselves. In addition, members have supported each other in living with RP and been a great source of guidance and advice to new patients.

All of this continues to be the case, but we now recognise more than ever that members have an important role ensuring that the charity is truly representative.

This even more so as we work to encourage more investment in RP research and to influence its direction as well. The same applies to investment in our support services. If we can lay claim to vibrant patient endorsement the charity can only get stronger and stronger.

The board reaffirmed its commitment to supporting members, providing good quality information, reaching out to new members and ensuring the charity is representative of people with RP. Many of our member’s renewals are due on January 1st. If this is the case with your own membership do please renew as soon as possible.

If you are not a member you can join at www.rpfightingblindness.org.uk or by calling 01280 821334 and asking for a membership form. www.rpfightingblindness.org.uk

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FOCUS

Southampton Researcher in the Spotlight In this issue we feature Professor Andrew Lotery, Professor of Ophthalmology at the University of Southampton and Honorary Consultant Ophthalmologist at Southampton University Hospital.

Andrew runs both laboratory and clinical research programs, dividing his week between vision research at The University of Southampton and seeing patients in Southampton Eye Unit. His special interests include genetics, stem cell and synthetic biology repair and gene therapy. He leads many clinical trials and basic research studies and is Principal Investigator on 15 charity funded research projects. Interestingly, Andrew was listed in the Times 2010 list of Britain’s Top Doctors. We caught up with him recently and put a few questions to him from RPFB members‌ Andrew, tell us a little about your academic background and how you found yourself working on RP? I qualified from Queen's University 10

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Belfast in 1989 and became fellow and Assistant Professor at the Department of Ophthalmology and Visual Sciences at the University of Iowa before taking up my current post in 2002. My research has always been in the genetics of retinal diseases and so it was a natural fit that I would work on RP. I run a tertiary referral clinic for RP patients at Southampton and again it was natural that my clinical work with RP patients would support my research.

You currently have a project grant from us - how much of a difference has that money made to progress?

It has enabled me to employ a very talented post-doctoral scientist in Dr Heather Thomson. Without this money we would simply not have the staff to do the work so it has made a huge difference.

Interesting. Tell us a little more about the team you work with at Southampton?

I work with a great team - one of the best parts of my job. In the clinic I work with junior doctors, clinical fellows, clinical scientists (such as our electrophysiologist), nursing teams, photographers, optometrists and dedicated research nurses. They allow me to run clinical trials, accurately assess patients and take blood samples for our genetics

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FOCUS research and genetic counselling. In the lab I work with a mixture of junior and senior scientists. These include young doctors and scientists doing PhDs, medical students doing research degrees and my research assistants and administrative staff.

Or put another way I am responsible for raising the funding to pay for around 15 peoples’ salaries! That keeps me on my toes!

If you hadn’t made it as a scientist, what would you have really liked to be doing now as your dream job?

To be honest I think I’ve found my perfect job which gives me the

opportunity to both interact with patients and do science. This is a great privilege. However a job as a ski guide or as a Yosemite park ranger sounds good – at least for a few weeks.

Is there any chance of a fun photo to show our members, they get bored with pictures of scientist in white labcoats?

Here you go!

From our Isle of Wight RP Group Professor Lotery was invited across the Solent in October to give a comprehensive presentation on RP, including details of his latest research. In addition to the Isle of Wight RP group, some of the island’s opticians were present; Andrew gave them indicators for RP diagnosis and did an excellent job of getting the opticians more familiar with RP and with the charity.

at Southampton Hospital that the charity is funding. This sum was raised by a sponsored ‘Round the Island’ walk in May, the Whitecliff Bay Weekend in September and Colin driving a motorbike and sidecar round a local speedway track, together with many other smaller events.

Colin McArthur also announced that the group’s fundraising has raised over £20,000 for the research project www.rpfightingblindness.org.uk

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NEWS

We need you!

As you may be aware, we recently launched a new community volunteering role for supporters of the charity.

We are delighted to announce that The role of a VLR encompasses the first volunteers have now five main areas, these being: attended the required training 1. To carry out talks and sessions and been accepted into presentations to people the programme to become a interested in the work of the Voluntary Local Representative – or charity and who wish to find VLR for short. out more about RP. These include community groups such as Lions and Rotary Clubs and Women’s Institutes.

2. To raise awareness of the charity and any upcoming events or fundraising initiatives within local media.

3. To ensure the charity’s information is available in hospital eye departments, local blind societies and other statutory and voluntary organisations.

4. To attend local health and sight exhibitions to reach people affected by RP. 5. To represent the charity at fundraising events.

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NEWS

Our new volunteers are all going to be working within their local area in order to carry out this role. One of our long-standing volunteers, Ben Pullan, has been working in a similar capacity in the North East for the last 18 months with great success.

To extend the VLR programme further, we are currently looking

to recruit some more volunteers in the following areas: Scotland, Wales, Midlands, London and the South West.

If you are interested in finding out more about the programme, whether you live in one of the areas listed above or not, please telephone Julie at the office or email julie@rpfightingblindness.org.uk

Telephone Befriending Service befrienders willing to keep in touch on a monthly basis with people dealing with RP, or needing help in supporting a family member with RP. Befrienders young and old, male and female, and from various cultural and ethnic backgrounds will link up with you if you need practical guidance, help coping with a specific issue, or just a friendly discussion now and then.

The telephone befriending service started out as a pilot project last year as an extension to the helpline service, and we now have an excellent group of telephone

Whatever type of RP you may have, a befriender will be glad to help you. To make contact, call the helpline on 0845 123 2354 or email tbs@rpfightingblindness.org.uk. www.rpfightingblindness.org.uk

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EVENTS

Retinal Awareness Group (RAG) Weekend 2012 The RP Fighting Blindness RAG event takes place in Blackpool over the weekend of 23rd to 25th March.

The 3-day conference is held at the Carousel Hotel and we are delighted to invite you to take part.

The RAG conference, social and activity weekend regularly attracts over 100 attendees and excellent speakers and aims to provide information about living with RP and related syndromes. We are proud to deliver RAG in partnership with our North West Branch.

A detailed programme will be published soon, but this year will include eminent keynote speakers Professor Graeme Black and Genetic Counsellor Georgina Hall from Manchester Eye Hospital.

Delegates will have exclusive use of the hotel which has easily accessible rooms and lifts.

Carousel staff are always willing to help visually impaired guests and facilities for guide dogs are close by. All presentations will be amplified and a loop system will be in place.

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The event will run from noon on the Friday to noon on the Sunday and costs from ÂŁ135 per person, including accommodation, meals, activities and refreshments.

For more information call Carole Holmes (01253 404194) or Beryl Duggan (01244 680463), or to book please contact the hotel directly (01253 402642). If you would like to take part, please book early as we know a few people missed out last year.

We really hope you can join us.

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FUNDRAISING

Artist Donates RP Christmas Card Artwork East Sussex artist Tina Wray, who has RP, has produced three beautiful pictures for RP Fighting Blindness to use in this year's Christmas cards.

Tina herself, pictured here with the cards coming off the printer last month, has lost 95% of her sight. She continues to study art and her talent has won her accolades at her college and at our own RAG event last year, when she spoke eloquently about her RP and her painting and exhibited several pictures.

The cards are A5 size and very high quality; and the printing design costs have been sponsored by two companies, Penbow Displays Limited and Fast2Finish in Kent. All proceeds of the card sales will therefore go to support the work of RP Fighting Blindness.

The cards have been very successful and as we go to press only a very limited number remain available to order. Because of this they are only available to buy online at www.rpfightingblindness.org.uk. www.rpfightingblindness.org.uk

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FOCUS

Music as a Way of Coping

hearing; I was a civil servant for 20 years, but as the condition worsened I was forced into early retirement. Now I play at a restaurant in London and I run a “When I play the piano I’m no longer percussion workshop for people a deaf-blind nobody. I’m in a with mental health issues. different world. I am a pianist, a composer, an improviser, a Sight impairment came on first. communicator. The ability to bring on When I started to struggle to read good feelings in myself and others is the score I was at a crossroads – very special to me – it compensates until I discovered composing for things I’m unable to do.” through improvisation. There are some congenitally blind pianists who knock spots off me technically, Mark Pampel but my playing is more emotional – will be known to a bit more avant-garde. many through With Usher you are losing your his playing keyboard at our hearing too, that must be especially hard for a musician? conference on many occasions. Hearing loss started was when I He is faced with sight and hearing was 10 and it’s been deteriorating loss as a result of Usher Syndrome; ever since. I’ve lost 75% of my here Mark talks about the hearing and I don’t know when it will importance of music in his life. go altogether. When I think about it I feel very sad – and I start to play Mark, thank you for talking to us. the piano more energetically or When did you first start to realise aggressively! how important music was going to be to you?

Without hearing aids I wouldn’t be When I was young one of my piano teachers said I might be a concert pianist, but my brother kept dragging me out to play football, so I didn’t practice. Having Usher Syndrome means that I’ve now had to adapt to losing both sight and 16

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able to have a conversation. My current aids make the piano sound natural, but they are not as good as I would like – I hear harmonics and overtones that I shouldn’t hear, so I have to put a blanket behind the piano to soften the sound.

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FOCUS off issues. I could talk about pianos forever, I’m a bit of an anorak for that.

I’ve had problems with hearing aids.

Once, after coming home with a new pair to try, I went straight to the piano and started to play. The top octaves were distorted and there was a terrible booming. It made me feel awful and I could feel a black cloud of depression coming on, but the NHS said most people want to hear speech, not music, and because I was in a minority they couldn’t help me. I’m always hoping that the hearing aids of the future will be more sophisticated.

What advice would you give someone with a visual impairment interested in starting in music?

I’d encourage it strongly. I’ve been playing piano from age 5 and learned to read music, and I find that expression without barriers is both empowering and therapeutic such is the power of music!

Creating music might seem daunting at first but, with a little experimentation, progress can be made without years of practice. A good portable piano keyboard with lots of functions can cost only £150, you don’t need to fork out thousands Playing piano can be physically for a decent piano. Some keyboards demanding. And it helps if your body have easy to follow programmes to is in good shape. It’s almost like copy-play music and it is worth being an athlete – I sometimes enquiring about these too. compare playing piano to playing With perseverance and perhaps a football; ducking and diving, little help from a basic course you twisting and turning. will soon be able to use a keyboard.

One of my hobbies is to rank the From there on there is no limit to pianos I play between 1 and 10, the how much you can achieve. better the piano, the more spiritual the sound. My own upright piano is In fact, right now, as athletes and organisers fine-tune their reasonably good. It’s a bizarre hobby, I know, but it’s only like train preparation for London 2012, Mark is preparing to perform as part of spotters, who write down train Cool Fusion, a creative partnership numbers. I compare pianos and forming part of the accompanying draw up little graphs in my head; it makes me laugh and takes my mind Cultural Olympiad. www.rpfightingblindness.org.uk

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FUNDRAISING

22nd April 2012 26 miles and 385 yards Are you brave enough to take on the London Marathon challenge in 2012?

Can you raise £2,250 in sponsorship?

• Limited London Marathon places available • Places also available on the Adidas Half Marathon Register for either NOW by emailing michelle@rpfightingblindness.org.uk

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FUNDRAISING

Stars of our Community

Lewis Jones

Jon Addison

Lewis Jones, Amy Spiers, Linda Still, Jill Hendry, Gail Gilkes, Rebecca Purshouse, Jonathan Addison, John Oxley, Michael Purshouse, Mark Townsend and Andrew Robinson all jumped out of a plane in September to raise money for the charity.

Amy Spiers, aged 16

Amy, 16, deserves special mention as she decided to take part as a way of supporting her younger sister Katie who is 14 and was diagnosed with RP in April.

This inspirational group of people, some of whom have RP, have raised a magnificent £10,000 between them. Our top para-fundraiser was Jill Hendry with £4,500 raised through sponsorship and donations. Our thanks go to

everyone who made the ‘Jump for Sight’.

2011 has been a fantastic year with so many people supporting the charity through fundraising activities. There are too many to mention – everyone has done such a tremendous job.

So, to everyone who held a coffee morning, who stood in the cold at collections, who created events, had fun, and represented us so well, and to the crazy people who pushed themselves to the limit all in the name of fundraising: you are our unsung heroes and without you much of what we do would not be possible – thank you.

Keep telling us about your community fundraising STARS. email michelle@rpfightingblindness.org.uk www.rpfightingblindness.org.uk

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BRANCHES

News from our Volunteer Groups Hampshire Branch

Coventry Branch

Steve Harris

Leigh Kelly

Saturday September 24 was a perfect day for our Stride for Sight. After a pleasant lunch at the excellent hostelry in Hill Head, we set out to stride the 5 miles to Lee-on-the-Solent and back, with a number of stops for ice creams, coffee, or simply to admire the splendid views and the activity on the water. We were delighted too to welcome a group of members from Stoke-on-Trent, who were staying in the area and were able to join us on the day.

Our recent highlight was a sponsored May bike ride from Stoney Stanton to Skegness, some 102 miles away. As well as organising the event with the help of his wife Lisa, Rob Merry completed the ride along with 51 others, raising a fantastic £5,378 for the charity, a magnificent sum.

Thank you everyone who took part, you are all wonderful, and Rob writes about the experience on the next page.

We also completed our street collection season at Romsey on 1 October, raising the excellent total of £1,095. This was a great result, and we must say a big 'thank you' to everyone who turned out to help.

A date for your 2012 diaries; on Saturday 21 April we hold our next meeting in Winchester. In the meantime, we would like to send Seasons Greetings to everyone and if you would like to get in touch with Hampshire Branch you can call us on 023 8047 6894.

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We must also thank Travis Merry who organised an addictive brain teaser quiz. Travis raised £57 by selling quiz sheets to members and school friends and at the time Travis was only 9 – well done Travis!

Sue Drew was the speaker at our meeting in September telling us about her role as Outreach Officer for RPFB. Thank you very much Sue, and keep up the good work. At our December meeting the speaker is Dave Monks MBE; David is one of our regular members and was awarded his MBE for his voluntary work with visually impaired people.

Congratulations David from us all.

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BRANCHES

Cycling Challenge Rob Merry As a member for many years (my mother-in-law Jean has RP) and a keen cyclist who has taken part in many organised rides, I decided to arrange my own 100 mile trip to raise funds for the charity. Using a Facebook page I asked for cyclists to take part and soon had 60 coming forward, all happily paying an entrance fee.

On the actual day of the ride I was supported by 52 riders who turned up at our starting point in Stoney Stanton at 5am with a view to setting off after bacon sandwiches – kindly supplied by the Blue Bell licensees Kate and Lee. Volunteers manned 6 stops on the route so that riders could top up on drinks and chocolate to keep up their energy levels. Though we had a very cold start to the challenge, the ride was virtually trouble free with just three punctures along the way. All the riders made it to be greeted at the clock tower in Skegness with a round of applause from members of the branch, and to be presented with medals bearing the charity’s logo.

The riders took from 5hr 20m to 10hr 20m, but everybody completed the ride and hats off to them all for raising a fantastic total of over £6,000 with Gift Aid. It was a real achievement and I am glad I took on the challenge.

If you are thinking of a fundraising bike ride, I am happy to offer advice, call me on 01455 348982.

Prize Draw Linda and Colin Macarthur In 2012 our main prize draw tickets will be sent out in the Spring. In the past many wonderful prizes have been donated by our members and supporters and we hope this will continue. If you can offer a prize that could be used in the draw please contact Michelle at the office. The draw has raised in excess of £200,000 for RP research over the years, so thank you for your generous support and long may this continue. www.rpfightingblindness.org.uk

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EVENTS

Coast 2 Coast: The Wainwright Way Challenge 2012 The Coast to Coast walk (C2C) is a 190 mile hike crossing the North of England. The route was devised by renowned walker and writer Alfred Wainwright and has become one of the most inspiring long distance walks in the world. In August 2012 the RP trekking challenge comes back to the UK to give 20 RP’ers and our supporters the opportunity to take on this fantastic route. We invite readers to join us.

We will meet in the coastal village of St Bees ready to start our walk early the following morning. The route follows the coast before heading east and entering the Lake District National Park, home to spectacular lake and mountain scenery. Though not high, the mountains are rugged with steep footpaths. From Shap the C2C route levels out to cross the undulating farmland between the Lake District

The itinerary Day 1

(20 August 2012) Travel to St Bees

Day 2

St Bees to Ennerdale Bridge (14 m)

Day 3

Ennerdale Bridge to Rosthwaite (14 m)

Day 4

Rosthwaite to Patterdale (18 m)

Day 5

Patterdale to Shap (16 m)

Day 6

Shap to Kirkby Stephen (21 m)

Day 7

Kirkby Stephen to Reeth (24 m)

Day 8

Reeth to Danby Wiske (24 m)

Day 9

Danby Wiske to Clay Bank Top (22 m)

Day 10 Clay Bank Top to Glaisdale (19 m) Day 11 Glaisdale to Robin Hood’s Bay (19 m) Day 12 (31 August 2012) Depart for home 22

The RP Helpline 0845 123 2354

87856 RP FB Dec Newsletter 3_Layout 1 21/11/2011 16:45 Page 23

EVENTS we are restricted to just 20 places, and as we go to press just 10 are remaining. To sign up now and be part of a very special team of trekkers, email michelle@ rpfightingblindness.org.uk or call 01280 821334. You can also read all about the challenge at and Yorkshire Dales, where the high www.trektofightblindness.org.uk ground returns, but with less exerting ascents. At Richmond we will leave the Dales and hike across The C2C walk will be led by an the low lying Vale of Mowbray to experienced trekker and a doctor Ingleby Cross and the beginning of or nurse will be present too. the North Yorkshire Moors. From Accommodation will be provided. here the trail will lead us on a roller The costs of the trek are coaster ride across heather covered approximately £600 and the hills to the North Sea and Robin remaining £900 of your fundraising Hood’s Bay. will support the work of RP Fighting Blindness. £100 of your Can you commit to raising £1500? fundraising target must be paid Can you commit to taking on this when you register. Please ask for amazing challenge? Due to the limited accommodation available, the information pack.

RP Fighting Blindness funds medical research into potential treatments for retinitis pigmentosa (RP), a genetic disorder which can lead to blindness. The charity also offers comprehensive information and emotional support to those affected by RP and their families.

Post:

PO Box 350, Buckingham, MK18 1GZ

Email:

info@rpfightingblindness.org.uk

Phone: 01280 821334 Please note that the office will close at 5pm on Thursday 22 December and reopen at 9am on Tuesday 3 January

www.rpfightingblindness.org.uk

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87856 RP FB Dec Newsletter 3_Layout 1 21/11/2011 16:46 Page 24

EVENTS

The 2012 RP Calendar January

February

March

25th The RP Parent's Conference Birmingham

11th Adidas ½ Marathon

April

May

June

17th Moorfields Patient Information Day

5th – 7th Walk Across the Isle of Wight

23rd The RP Conference London

July

August

September

14th – 15th Retina International Hamburg

21st – 31st Coast to Coast Trek

22nd – 23rd Stride 4 Sight

Various Dates Jump 4 Sight Skydive

22nd – 23rd Whitecliffe Activity Weekend

October

November

December

Date TBA Four Capitals Dinner

4th New York Marathon

23rd – 25th RAG Weekend

22nd London Marathon

15th London 10k Run

For more information about any of our events email michelle@rpfightingblindness.org.uk or call 01280 821334 The RP Helpline 0845 123 2354

www.rpfightingblindness.org.uk