Look Forward issue 146 - March 2013

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Look Forward Issue 146 March 2013 Registered Charity No. 271729

Inside Gene Therapy Update Page 3 Research News Page 4 Cycle Challenge Page 10 RP Conference Page 12

RP Awards Nominations Open Nominations are open for the RP Awards, presented at our conference in June. RP Fighting Blindness is looking to you in our search for those who deserve our recognition.

The awards, started in 2010, have become an important part of our calendar, recognising fundraisers and volunteers. Our features and stories in this issue might inspire you to think about who to nominate. Also inside you'll find research news, our writing competition, the RP conference and profiling Michel Michaelides...

The RP Awards Page 15 Trek the Sahara 2014 Page 16 Meet the Researcher Page 17 Team Finlay Page 20 Short Story Competition Page 25

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NEWS

Letter from the Chief Executive David Head MBA Well, here we are already well into 2013 and the relentless pace of change continues.

As you will read in this issue, there are changes to the team and plans to change our constitution. There is news on research progress in various fields and more fundraising activity. There is a new short story competition and some exciting challenges which we hope you will take on.

The RP Conference this year, which is featured on page 12, is going to be particularly important for all sorts of reasons, so if there is anything for me to highlight here in my letter this time, it is that date: Saturday 22 June at The Pullman Hotel, Euston,

London. I hope to see many of you there; it’s a crucial event for the charity and also, once again, we have secured some super speakers including, as ever, some eminent RP researchers presenting their work.

I’m keeping this note brief this time as there is so much in this issue anyway, but as ever, thank you for your support and I hope you enjoy your magazine.

PS: When you opened this magazine or CD, two books of RP raffle tickets should have dropped out. Please can I urge you to buy them (or sell them to your friends). Our top prize this year is a holiday in the Lake District and our annual raffle is a really important part of our fundraising for RP research.

Many Many Thanks The trustees of RP Fighting Blindness would like to extend a special thank you to those who renewed membership with the charity in January. Many of you also made additional donations over and above the membership fee, and this too is very much appreciated. Lynda Cantor, our founder trustee, said, “We haven’t sent individual thanks to everyone, but rest assured that this support is invaluable. Since I started the charity our members have always been fundamental to our work and this continues to be the case.”

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NEWS

Gene Therapy Update Most scientists agree that gene therapy is one of the best prospects for treating RP. There is some exciting work going on in the USA and in two centres in the UK to develop a concept which is surprisingly simple – replacing a faulty gene in retinal cells with a good copy – though of course the cutting edge techniques and technology involved are incredibly complex. Scientists at Oxford University led by Professor Robert MacLaren and at UCL Institute of Ophthalmology led by Professor Robin Ali are at the forefront of this work.

Our current ‘Gene Team’ fundraising appeal, inspired by young Toby Addison (see page 4), is intended to raise £145,000 to support Professor Ali’s group.

“We wanted to raise £30,000 in 2012, and £115,000 in 2013”, said David Head, Chief Executive, “and in February we reached £72,000 – well on the way to our target”.

Professor Ali also commented, “The journey from proof-of-concept to effective therapies for patients is long and expensive but the appeal is making a huge contribution to

our efforts to build the extensive infrastructure we need to develop gene therapy for sight loss.”

Updating us for Look Forward, Professor Ali also said, “In January we were granted ethical approval to conduct another clinical trial of gene therapy for an inherited retinal dystrophy; this time to investigate safety and efficacy in treating achromatopsia. I am also pleased to announce that we will be holding a patient engagement event in London later this year; an opportunity for patients to meet our team and for us to explain the science and provide updates on our progress.”

Donations to The Gene Team appeal can be made by cheque (to RP Fighting Blindness) addressed simply to The Gene Team, Freepost RP.

email: info@rpfightingblindness.org.uk

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RESEARCH

Olympic Values Award for Toby

ceremony as we were so overwhelmed”.

Toby is investing boundless energy, 11 year old Toby Addison, who has enthusiasm and RP and features in our Gene Team courage into serious Is that a gold appeal, has been recognised at an athletics. He is a medal around award ceremony in his home town. strong 100m sprinter your neck, Toby? and long jumper, but At the Welwyn Garden Sports also seems to have the stamina Awards, seven individuals were needed for longer distance running. recognised for their embodiment of Nikki said, “When he was asked, on the Olympic and Paralympic values leaving his primary school, what he – courage, determination, equality, wanted to be, his answer was ‘a excellence, friendship, inspiration Paralympian’”. With several county and respect. Toby, who was at the competitions lined up, the event having been nominated for endorsement of his coach, the Pupil of the Year, received the support of Nikki and Jon, and his award for courage. own proven ability and courage, this Mum Nikki said, “We were so proud dream is within touching distance.

In fact, inspired by London 2012, we of just him being there as a think the family’s plans for 2016 nominee, for him to have won this might just have to include a couple award is amazing. We didn’t hear what happened over the rest of the of weeks in Rio De Janeiro!

Rhodopsin RP Project: The Sequel Work funded for the last three years by The Big Lottery Fund (BLF) is set to continue, following an RP Fighting Blindness board decision last month to invest a further £200,000 from our own resources.

Professor Mike Cheetham had submitted an application for three 4

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years’ funding based on the success of the BLF project which came to an end in October. As was reported earlier, this work to identify a potential pharmaceutical therapy for Rhodopsin RP did make significant progress. Our Medical Advisory Board felt it was important that this impetus was

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RESEARCH The new project will also see the reforming of the Stakeholder Liaison Group. This is a small group of people affected by Rhodopsin RP, or other forms of autosomal dominant RP, who meet not lost, saying they “thought this a three times per year with the good project with clear translational scientists to ensure a good potential” and recommending it as understanding between the research team, the charity, and a high priority for funding. the needs of patients.

Professor Cheetham will use the If you are interested in joining funds to further test (in-vitro and in-vivo) the drug that was identified the SLG and live within ready by the BLF project and also to look travelling distance of Moorfields at other potential candidates. This Eye Hospital, please let us pre-clinical work is with the objective know by emailing Chief Executive David Head at of getting to the stage where a full david@rpfightingblindness.org.uk clinical trial could be considered.

Retinal Implant Approved by FDA The Argus II retinal prosthesis developed by Second Sight Inc. has become the first approved such device in the US. The company claim "life-changing potential" for people with RP. After 20 years of research and development, Second Sight has announced that the Argus II has received US market approval from the FDA to treat people with late stage RP. “We are thrilled to be able to offer an FDA-approved long-term

therapy for people with advanced RP,” said Robert Greenberg, President and CEO of the company.

He continued, "Argus II is intended to provide electrical stimulation of the retina to induce visual perception in totally blind individuals and has the capacity to offer life-changing visual capabilities."

It is important to note that artificial vision is not the same as normal vision, but investigators involved in the trials describe this approval as "incredibly exciting". www.rpfightingblindness.org.uk

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RESEARCH "In patients that have been implanted to date, improvement has been invaluable,” said Professor Mark Humayun at the University of Southern California.

With approval from the FDA, the device will be available later this year in clinical centres across the US. Approval comes after two decades’ work and $200M in public and private investment.

The system works by converting images captured by a miniature camera into small electrical pulses

that are transmitted wirelessly to electrodes on the surface of the retina. These pulses are intended to stimulate remaining cells resulting in corresponding perception of patterns of light in the brain; the patient then learns to interpret these visual patterns. Second Sight also secured European approval for the system in 2011.

Note: This article is based on press releases received from Second Sight.

Retina Implant AG Study Results German company Retina Implant AG has announced the publication of study results in Proceedings of the Royal Society B.

The study was led by researchers at University Eye Hospital in Tubingen, Germany, including Professor Eberhart The company, which is developing Zrenner (pictured). subretinal implants for patients Patients were blinded by RP, has announced that results from part of its multicentre implanted with Retina Implant AG’s clinical study were published in the subretinal wireless microchip and were able to adjust the level of peer-reviewed journal. The stimulation received to view research found that functional vision was restored in the majority objects at varied distances. Three of nine German patients implanted patients were able to read letters spontaneously and during as part of the company’s second human clinical trial and in addition observation in and outside the Retina Implant AG claim that visual laboratory patients reported the ability to recognise faces, distinguish acuity for two patients surpassed objects and read signs on doors. the best of the previous trial.

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RESEARCH “The results of our first human clinical trial exceeded our expectations, and we are further encouraged by the results from the second”, said Zrenner. Walter-G Wrobel, CEO at the company, added "Our quest (is) to secure CE mark approval and provide RP patients living in darkness with a treatment option. We are humbled by the 36 patients we’ve implanted and their willingness to participate.”

The company’s first clinical trial began in 2005 and the second in

2010 in Tubingen. This has since expanded with implants taking place in Hong Kong and the UK as well as Germany.

“As the relevant patient group in the UK we have been watching Retina Implant AG’s research with great interest,” said David Head, CEO at RP Fighting Blindness.

“The results published show promise to one day restore functional vision to people with advanced RP.”

Research Proposal Record

Medical Advisory Board will now be assessing these applications In late 2012 we and in July the Trustees will make ran a call for a final decision about funding. We research are fortunate to have received proposals to large donations last year to allow attract new scientists and new ideas. We had this and we are talking to an amazing response from several prospective funding partners for research centres including teams new work in 2013 and 2014." we have not funded before; even a Chairman Don Grocott added couple of applications from "This is a record in terms of grant scientists in Europe. In fact, we applications to the charity and we received 14 preliminary requests have to think very carefully when for funding totalling about £2m. it comes to assessing them.

Chief Executive David Head said, Whatever happens, it's an exciting position to be in and I am looking "It's fantastic that such good forward to hearing our Medical science is out there and that we have the opportunity to work with Advisory Board's comments and recommendations." some of the world's best. Our email: info@rpfightingblindness.org.uk

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CASE STUDY

More Than Just Positive Spin VI cricketer Justin shows just what can be achieved.

sport and no shortage of skill.

Before his sight deteriorated he played rugby, hockey and cricket.

Nowadays he plays ‘blind cricket’, Justin Hollingsworth culminating last year in being called up for international duty for has just turned 16 and England as their youngest player in the 2012 Ashes Series – every has RP. sportsman’s ambition whether Though his disabled or not. sight has deteriorated Cricketing Star significantly over the last Justin was a keen ‘red ball’ few years he Justin (left) with cricketer up to 2009 for Leamington is one of England World-Cup CC and Arnold Lodge School, but team mate Matt Dean those people found it increasingly difficult to who remains continue – a situation which positive and inspired. His sporting culminated one day during a dusk success, support for our work, and game facing a fast bowler. However school life make him increasingly Warwickshire Bears VI team quickly inspiring to others too. took him under their wings and he Justin has X-linked RP, which debuted for them that year. In fact means male members of the family having quickly adapted to the new can be affected and female ball and rules he scored his first members can be carriers. His great century against South Wales in July grandmother was a carrier, his 2010. grandfather is affected, and his Some of the Warwickshire team mother Bev is a carrier. Justin is also played VI International cricket one of three brothers – his siblings for England and spotting his talent are unaffected however. invited Justin to have a trial. In Fortunately, RP isn’t his only legacy August 2011 he was picked to train from his parents – he has also with England and worked hard to inherited his grandfathers’ love of gain and keep his place. In early 8

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CASE STUDY Justin (2nd left) with England VI Ashes team

2012, Justin received the news he had been waiting for – he’d been selected as a member of the England VI Cricket Team for the Ashes, making his debut that May. Next came the World Cup in late 2012 in Bangalore, India. The team were inspired by support from Alistair Cook and many more and recovered strongly after losing to India, Pakistan and then Sri Lanka in the first group games, going on to finish in fourth place. During the campaign Justin scored an impressive 69 in England’s trouncing of South Africa, team spirit was lifted and they went on to beat Australia amongst others – always very satisfying for an Englishman. England’s respectable performance took them to the semi-finals where they were beaten

by Pakistan.

“It was a great experience for me”, says Justin, “Training and travelling with the squad, being greeted in Bangalore by hundreds of supporters, and the opening ceremony – what a feeling. It will stay with me forever.”

School Star Justin is very grounded though, he is studying hard in this important exam year. Arnold Lodge School have been incredibly supportive in many ways, not least by choosing RP Fighting Blindness as their charity of the year for 2013, with an expectation of raising many thousands of pounds.

Justin’s Headmaster David Williams said recently, “Justin’s courage has been an inspiration to everyone at the school”. This is borne out, for example, by a fellow pupil Sophie Davies choosing to make a parachute jump for us on her 16th birthday, raising over £1,100 already and with more to come. The students’ support for the charity is truly inspired by Justin and his family; he is a fine example of what can be achieved through hard work and dedication.

Justin has asked us to express a huge thank you to his school, school mates and all of his team members. For more information about VI cricket visit the website www.warwickshireccvi.co.uk or contact Justin through RP Fighting Blindness. www.rpfightingblindness.org.uk

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FUNDRAISING The RP Tandem Challenge Solos Too! 05-10 Sept 2013 Join us for a 356 mile cycle ride around England in September. This is a unique and exciting challenge for four solo riders and ten tandem pairs, so anyone can take part whether visually impaired or not.

Starting and finishing in Coventry and taking in some of our safest and most beautiful routes, the six

day challenge will also push you hard, but you will be well supported and everything will be organised for you. In return you’ll be asked to raise £1,000 in sponsorship for RP Fighting Blindness.

This is our first major cycle challenge, so you’ll be pioneers.

Places are limited and some are already taken, so if you want more information or want to reserve your seat, contact us soon!

Round The Island Walk Isle of Wight Challenge 21-27 Sept 2013 If you enjoy hiking you’ll love our Isle of Wight Round The Island Challenge.

Covered over five full days as part of the Isle of Wight Walking Festival, your challenge will be to conquer the 74 mile stunning coast path of one of Britain’s best beauty spots. We will organise everything including your B&B accommodation and transport 10

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out to the route each day. You’ll need to get fit, take on the challenge, and raise sponsorship of course. As we go to press just seven places remain available so if this island adventure appeals to you, get in touch soon.

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FUNDRAISING Carrots Night Walk 2013 Hike London, Cardiff, Birmingham or Glasgow Following the success of the Carrots Night Walk last year in London, this year we are working with Fight For Sight to organise a walking team in four cities. We need 90 walkers in total – can you help us by taking part or even organising a group?

Each walker will need to raise just £250 in sponsorship.

The amazing thing is that Fight For Sight will match this, and then between us the two charities will invest this double amount into RP research.

It’s a no-brainer, as they say!

So help us raise £22,500 and get £45,000 into RP research. The date is 20 September, it’s a one-night walk and we know it will be great fun. Lit up London, Cool Cardiff, Glittering Glasgow and Brilliant Birmingham are our host cities and we will be there supporting you all the way. Contact us now!

New York Marathon 26 Miles Across The Big Apple

We have a small number of places secured at this year’s New York Marathon. It’s a big challenge in a big city, but we know there are people out there who are able to take it on. Five fantastic RP’ers are doing so already and if you’d like to join International Team RP, please let us know. The event date is 03 November, and we will arrange your accommodation as well as your entry, but you need to act quickly if you want to be there!

Contact Us To get more information about any of these exciting 2013 RP challenges, or to register your interest in a place, please contact us as soon as possible. You can call Michelle at the office on 01280 821334, email her on michelle@rpfightingblindness.org.uk or follow the links on our home page www.rpfightingblindness.org.uk

email: info@rpfightingblindness.org.uk

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EVENTS

The RP Conference 2013 Members, patients, family and friends, supporters, clinicians and researchers alike are invited to take part in the RP Fighting Blindness Conference on 22 June 2013.

This one-day event is an important part of the RP calendar, typically bringing together a couple of hundred people to hear from 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 also incorporates the charity’s formal AGM as the last session of the day.

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Time and Place This year the RP Conference is at the Pullman hotel on Euston Road, London. The hotel is a few moments’ walk from both King’s Cross St Pancras and Euston stations and is next to the British Library. Guests are welcome to join us from 9am with the sessions starting at 10am. Lunch is provided.

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EVENTS Morning Programme

Afternoon Programme

Collaboration in the Visual Impairment Charity Sector Shiela Hooper, Director of Marketing, Guide Dogs for the Blind

Keynote address: The Research Race Professor John Marshall, University College London

Inspiration Annalisa D’Innelli, Journalist and playwright

Keynote address: Genetic Testing and Gene Hunting Professor Graeme Black, University of Manchester

The RP Fighting Blindness Awards Presentation of our four awards (see page 15)

RP Question Time Your chance to quiz a panel of RP researchers and clinicians

What Next for RP Fighting Blindness?

David Head, Chief Executive

Chairman's Conference Address Mr Don Grocott, Chairman of the Board

The Annual Prize Draw Draw and announcement of winners

Annual General Meeting The formal business matters of the charity

How to Take Part Members of RP Fighting Blindness are welcome to take part at no charge together with a partner or guide (though donations towards event costs are always welcome of course). Non-members are equally welcome at a cost of ÂŁ30 each, which includes refreshments all day and a buffet lunch. For members and non-members alike,

it is essential that places are booked, as catering arrangements are made in advance. Please call or email the office to confirm the number of places required.

Non-members will be invoiced. www.rpfightingblindness.org.uk

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NEWS

Converting The Constitution During the RP Fighting Blindness AGM, which takes place in the last session of the RP Conference, a very important debate and vote will take place as the charity seeks to transfer its business to a new legal entity.

reality the practicalities of the change will happen over several months.

Henry Bennett, Vice Chair and Treasurer, said, “The change is important because at present the charity does not exist as a legal entity separate from the individual In 2009 members trustees and so, currently, those individuals can be exposed to agreed that the Trustees could significant risks as the organisation and should grows. As an employer, grant giver, progress the supplier of services and purchaser, incorporation of it is far more appropriate for RP RP Fighting Fighting Blindness to be a separate Blindness, a more modern and legal entity, and this neatly fits with accepted way of constituting a our programme to modernise charity. This will not affect our work anyway.”

– we will continue to fund medical Prior to the AGM the formal research and deliver support for people with RP – but it is a proposal will be sent to every significant legal step to create a constitutional member and a copy new organisation and transfer all of of the proposed new constitution our assets and activities to it. will be published online. Members are urged to attend the meeting in A new constitution is now being London on 22 June and to support drafted and subject to our the board and Chief Executive by members’ formal approval a voting in favour of the change. In Company Limited by Guarantee the meantime the board are taking (CLG) or Charitable Incorporated legal advice to ensure the process Organisation (CIO) will be formed and registered with the formal date is smooth and that our work can continue uninterrupted. of transfer of 01 January 2014. In

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NEWS

The RP Awards 2013 The four RP Fighting Blindness Awards are an important part of our annual conference and an enjoyable way of us recognising and celebrating our supporters.

Please help us by making your nominations which need to be with us by the end of April by email or letter to the office.

The awards categories are: • The John George Award for Volunteering • RP Fundraiser of the Year • The Lynda Cantor Founder’s Award for the Future of the Charity • The Roger Green Award for Special Contribution Nominations can be made for any individual (who must be aware that they have been nominated).

Shortlisted nominees will be notified three weeks before the RP Conference on 22 June and invited to attend. The shortlists and then winners will be chosen by a panel of four people who will not be connected to any nominee.

Criteria for the Awards The John George Award is for the nominee who, in the view of the

panel, has contributed most significantly to the charity in a voluntary role.

RP Fundraiser of the Year will be awarded to the individual nominee who has contributed most significantly to the charity in a fundraising role. For example, in 2012, this was won by Alan Chamley who had raised thousand of pounds taking part in various RP ‘challenge’ events.

The Lynda Cantor Award is awarded to a nominee who is significantly influencing or contributing to the future of RP Fighting Blindness, and is under the age of 40.

The Roger Green Award recognises a significant contribution to the charity during 2012 or over recent years. In 2012 the inaugural Roger Green Award went to the Addison family; 11 year old Toby has RP and the family have been staunch supporters of our work ever since his diagnosis.

email: info@rpfightingblindness.org.uk

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EVENTS

Trek The Sahara 2014

Our very first RP Challenge was 100km across the Sahara Desert in 2009.

Five years on – we’d like to do it again!

This is an outstanding opportunity for adventure for sighted and VI people alike. A stunning environment in which to take on an amazing personal challenge and raise funds for RP research.

Accompanied by a support team and doctor, we will trek across terrain from archetypal dunes to dramatic lake beds.

This is a call for interest – please register yours. At this stage you won’t be making a commitment, but it is helpful to us when making arrangements for overseas challenges to be able to judge the level of interest.

Call 01280 821334 to register.

Dates are yet to be confirmed, please register your interest to help us plan. A typical expedition lasts 10 days in total and includes remote travel and trekking of approx. 100km. You need to be physically fit. Visual impairment no barrier to participation. Minimum age 18 (16 if accompanying a parent). Fundraising target £2,750 to be raised over the course of 2014 of which approximately £1,000 is a contribution to costs and £1,750 is donated to the RP Research Fund.

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FEATURE

Meet The Researcher In this issue we feature Dr Michel Michaelides from Moorfields Eye Hospital and the UCL Institute of Ophthalmology.

Mike is both a clinician and researcher and will no doubt be known to some of our readers as their own consultant. In the clinic he specialises in retinal dystrophy and as a researcher he is involved in a number of projects including working on the development of gene therapy. Look Forward managed to grab a few minutes of his time to find out more about the man behind the white coat.

being the commonest condition I see. Specialising in RP and related conditions allows me to see adults, children and their families which is both challenging and very rewarding.

It’s really interesting to us that you are both clinician and researcher.

That must give you an especially good understanding of the importance of the work of RP Fighting Blindness?

Absolutely – both aspects are important and mutually beneficial.

Having an insight into the patient's perspective, experiences and priorities is invaluable in developing research studies and strategies.

Equally, having contact with the cutting edge research being Mike, thanks for doing this. Let’s undertaken at Moorfields and UCL start with an obvious question; how Institute of Ophthalmology allows did you get into RP work, it’s quite me to provide up to date and reliable specialist after all? information to people we see with retinal dystrophies. The generous I have been interested in retinal conditions since early in my training support from RPFB and an FFB as an ophthalmologist. This became Career Development Award have a passion after my research degree allowed me to work on the preparation of several gene therapy in inherited retinal disorders and trials with my clinical knowledge was the start of my clinical and research endeavours that focus on being a very valuable component of retinal genetic conditions, with RP this development. www.rpfightingblindness.org.uk

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FEATURE Like all doctors you’d probably tell us you work 70 hours a week, but what do you do when you are not in the clinic or the labs?

Yes, I’d agree that if you're not careful you can end up working all the time – especially in this age of constant email access! Spending time with my two boys is how I like to take a break – although they are 3 and 5 years old so sometimes working is the less tiring option.

Talking of family, you won’t be surprised that we often get asked about your name. People assume your family is of Greek origin, is that right?

Yes, it is. Both of my parents are Greek Cypriot though I was born in Sutton Coldfield, which I am told is the posh bit of Birmingham…

If you had the choice of any dream job, what would you be doing now?

I feel very lucky to be doing something which I really enjoy but if I could do anything I would be an author of fiction. I love writing and in fact will soon be busy doing more for RPFB as we update the main website – I’ll be sure to keep that piece of work fact-based though!

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Mike, when we’ve done this before we’ve asked our subjects for a photo that doesn’t involve a white coat or lab background. Have you got a picture and story you’d be prepared to share with our readers?

This picture is from a skiing trip with my wife in January this year to celebrate my 40th! It was our first holiday away together without children for six years and also first time trying out my right knee since rupturing my ACL for the second time whilst playing 5-a-side football! Sadly, my football career is now over

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NEWS

Changing Faces at RP Fighting Blindness Readers may like to know that Julie Child, who is currently on maternity leave from the office, gave birth to Elise Bella Irene on 13 December. Julie and Elise are both very well and Julie will Denise has similar be returning to the office for a experience working “Keeping in Touch” day on 15 for another charity March. and will work closely with Carole In the Holmes who has meantime, at been supporting board level, we the RP Helpline on are pleased to a voluntary basis announce that for several years.

Henry Bennett, our Treasurer, Also recently appointed is has agreed to serve a second Communications Officer term on the board and has been Tom O’Neill. Tom brings a wealth appointed as Vice Chairman. of PR experience and knowledge Finally this quarter, Colin and will be working hard to raise McArthur has also agreed to the profile of the charity beyond serve another term as trustee. our existing membership.

Following a decision late last year by the Trustees to invest in the RP Helpline and provide support for the volunteers that run it, Denise Rawden has been appointed as Helpline Coordinator.

Both team members can be contacted by email using denise@rpfightingblindness.org.uk and tom@rpfightingblindness.org.uk

Both of these appointments are until January 2018 and we thank Colin and Henry for their continued commitment and support for our work.

email: info@rpfightingblindness.org.uk

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CASE STUDY

“Team Finlay” Running for RP Research All of us at RP Fighting Blindness are impressed and proud of our fundraisers. Often one individual can motivate a whole group, and 10 year old Finlay MacLeod is a great example. Here his Dad, Steve, tells us about Finlay, his RP and how his love of sport has inspired a whole team of fundraisers.

Last year Finlay was diagnosed with RP. He started having difficulty seeing in the dark, which lead to tests, then to Moorfields Eye Hospital and a diagnosis of RP. We were introduced to RP Fighting Blindness and it was an article on the need to raise funds for gene therapy research that captured Finlay’s interest and his desire to raise some money to help.

After a year that profoundly changed our lives, our plan was to run the London BUPA 10k together as father and son. Before long though we found out that Finlay wasn’t able to take part due to the minimum age being 16.

Last year Finlay and I really enjoyed running a 5k race together, so when he heard RP Fighting Blindness wanted people to run the London BUPA 10k he was very keen to help.

Finlay is a regular, sport loving 10 year old who enjoys rugby, football, cricket, skiing and running. He is an avid Liverpool supporter (Mum’s influence) and an avid Leicester Tigers supporter (Dad’s influence).

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Instead, Finlay set about getting a team together to run on his behalf, and so Team Finlay came to be.

Made up of family, friends, parents of Finlay’s friends and work colleagues, Team Finlay now has 17 runners and one inspiring Team Manager in Finlay. Some are running 10k for the first time, others are aiming for a personal best, but all are looking to do something for

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CASE STUDY Finlay and RP Fighting Blindness.

Virgin London Marathon

I was so disappointed when we learnt that Finlay couldn’t run, so disappointed that we couldn’t run it together. But now I’m so proud to be part of Team Finlay, so proud to be helping Finlay raise money for RP Fighting Blindness.

I am also touched by the kindness and willingness of others to get involved, to take part and want to support Finlay. Hopefully it will be the first of many Team Finlay events to come.

A short but important note to wish all our Virgin London Marathon runners, 22 of them, all the very best for the race on 21 April.

David Head, Chief Executive at RP Fighting Blindness, said, “Finlay and Steve’s story is amazing. Not just because of the fundraising but because of the support inspired from family and friends. I for one have already donated.”

If you would like to support Team Finlay please visit www.tinyurl.com/teamfinlay or send a cheque payable to RP Fighting Blindness to:

22 people times 26 miles is… er… er… well it’s a lot of gruelling miles for RP Research; well done to you all. We will have a report from the race in the next issue of Look Forward which is out in early June.

Backing for Backhouse One of our marathon runners from 2010 continues to fundraise for us, having encouraged staff at his employer JLT Management Services Ltd to donate at a Christmas event and through the giving of foreign currency. Roger Backhouse’s colleagues have donated several thousand pounds over and above a corporate donation made at the time of the race.

“Team Finlay” Freepost RP

Ongoing support like this from companies and colleagues is valuable to RP Fighting Blindness as well as providing great motivation to our fundraisers.

(That’s all you need on the envelope!)

We are grateful to Roger and to his colleagues. Thank you. www.rpfightingblindness.org.uk

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NEWS Top RP Geneticist to Address RAG 2013 The 2013 Retinal Awareness Group (RAG) weekend in Blackpool runs from Friday 12 to Sunday 14 April at the Carousel Hotel and we are delighted to invite you to take part again. RP Fighting Blindness is proud to deliver this event in partnership with volunteers.

presentation only at £10 (£5 for an accompanying guide or partner) and must be booked in advance with Carole Holmes (01253 404194) or Beryl Duggan (01244 680463).

Thames Rowers Epic Journey

Training is in full swing for John McKinney, David MacMillan and cox Sara Stark as they prepare to row 166 This social and conference weekend regularly attracts over 100 miles in May, from the source of the attendees, some excellent medical Thames at Lechlade to The Thames Barrier, through 45 locks and over 6 speakers and a wide range of activities. RAG also aims to provide days depending on conditions. The information and advice about living average age of the two scullers is over 71 and David has RP along with with RP and Usher Syndrome. Our two others in his family. keynote speaker this year is eminent geneticist Professor Alison David said, “Our aim in Thames Row Hardcastle from UCL Institute of 2013 is to raise a substantial sum of Ophthalmology. Alison will be money to maintain the pace of joined by Professor Mike Cheetham research into RP so that a cure for (UCL) and Professor Martin this distressing eye complaint can McKibbin (Leeds University). The be found, and so help future event programme is on our website generations worldwide.” The team and details will be added as they have the support of inspirational become available.

Matthew Pinsent, four times Olympic gold medallist, and have set up a The weekend costs from just £145 journal of the training and event at and to book contact the hotel on www.facebook.com/thamesrow 01253 402 642. A limited number where you can also leave messages of places are available for the of support. If you wish to donate, Saturday medical research 22

The RP Helpline 0845 123 2354

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NEWS please visit www.justgiving.com/thamesrow 2013

Kindle E-Readers for People with Usher Syndrome The parents of Usher patient Molly Watt, who spoke at the RP Fighting Blindness conference in 2011, have set up a trust in her name to support people with Usher Syndrome. Usher Syndrome is a form of recessive RP that is accompanied by hearing loss and can be particularly distressing and isolating.

Beryl’s Book Needs Delicious Dishes Beryl Duggan, who has a son with RP, is preparing to publish a recipe book to raise funds for RP Fighting Blindness. Beryl said, “We want to include readers favourites. We all have a favourite recipe somewhere which has been handed down to us from yesteryear or made up as we went along.”

Do you have one to pass on from your mother or grandmother, aunt or friend? Please share it with us.

Beryl intends to test all recipes submitted and will choose the best for inclusion in the book, together with your stories about where they came from and a little bit of the background of the recipe.

You can call Beryl on 01244 680463 As their first project the Molly Watt to learn more and to pass on your Trust have purchased a number of recipes. She would love to hear Kindle e-Readers which they wish from any of our readers, and to make available to people with especially from people with recipes Usher’s who might not otherwise be that can be readily prepared by able to access books very readily. people with a visual impairment.

The Kindle allows a reader to magnify text and millions of books are available to download. If you would like to apply for a Kindle eReader from the trust’s Access To Reading scheme please call Jane Watt on 07976 808456. email: info@rpfightingblindness.org.uk

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OUTREACH Reaching Out to People with RP Sue Drew, our Outreach Officer, is always looking for ways to reach people with RP who might not know about RP Fighting Blindness or the support we can provide. As part of this she is now our link with The Ciliopathy Alliance and will be speaking at

their conference this year, which takes place at the end of May. “It’s important that we collaborate with other organisations to reach as many people as we can”, said Sue, “This event is a great opportunity to do this and I hope RP patients and their families will take part”.

Ciliopathy Alliance Family Conference

RP Fighting Blindness is a founder member of the Ciliopathy Alliance which brings together patient support groups, researchers, and health professionals. Ciliopathies are diseases caused by defects in cilia including some forms of RP

31 May to 02 June

such as Usher Syndrome and XLinked RP. Cilia are slender, microscopic, hair-like structures that extend from many cells and play a vital part in our development.

The conference is at the Hilton Hotel in Northampton. Event and booking information is at www.ciliopathyalliance.org

RP Information Day Birmingham

30 May

The Council Chambers, Oldbury, West Midlands, 11am to 3pm including a light lunch

families, sensory support teams and indeed anyone simply interested in learning more about RP.”

RP Fighting Blindness is also organising an RP information day in Birmingham.

Topics covered will include the genetics clinic, genetic counselling and testing, medical research and social research, as well as a Q&A session. To book please contact Michelle on 01280 821334 or at michelle@rpfightingblindness.org.uk

“This one day conference on inherited retinal dystrophies is free of charge”, said Sue. “It is open to anyone affected by RP, their 24

Office Telephone 01280 821334

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NEWS

The RP Fighting Blindness Short Story Competition 2013 Are you a budding author?

This year RP Fighting Blindness is pleased to introduce the RPFB short story competition.

There is a story in many of us and this is your opportunity to tell yours; we are especially interested in story-telling from people affected by RP and their families.

We would love to hear from you.

The rules and entry are simple – we want to make it as easy as possible for you to take part. There are three different age categories and we will have certificates for our shortlisted entries and prizes for our winners. Who knows, there might even be a chance of us publishing some of your best stories?

Author Red Szell, writer Annalisa D’Innelli and journalist Joe Churcher will be our judging panel.

They will be looking for originality as well as checking out your writing skills. Your story can be about anything from your experiences or your imagination. What’s important

is that you grip our judges and make them want to read on.

Entries are invited in three age groups; up to 12, teenagers, and 20 plus, and can be sent by email, handwritten or audio recording no later than 31 July 2013.

Your story must not be more than 1,500 words, but there is no minimum. The full rules and more detail about how to enter are available on our website or by calling the office. www.rpfightingblindness.org.uk

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NEWS IN BRIEF Short Stories from our Supporters

Shrewsbury Scooters Michelle Carter I was delighted to attend a meeting of the Severnside Scooter Club in Shrewsbury and receive a cheque for RP Fighting Blindness for £600.

The club had adopted us and The Macular Society in 2012 and had obviously had great fun raising money for us both.

Reykjavik Result

cycling from Buckingham Palace to Hanoi in Vietnam during their gap year. Ed's mum Angela is a member of our group on the Isle of Wight and the lads are aiming to raise £10,000 – which is about £1 for each mile – to support our research work.

We will feature this story in full in a future edition of Look Forward but as we go to press the pair are in Tirana in Albania. You can read about this epic challenge at www.cycletovietnam.com

David Head

Hampshire Group News

Not exactly local, but last year we were joined on the Coast to Coast RP Challenge

by Icelanders Kristinn Halldór Einarsson and his wife Kristin Sjofn Valgeirsdottir. Kristinn and Kristin were sponsored by members of the Icelandic RP Society and family and friends and have now sent us a donation of £5,000. This is a fantastic contribution from close friends and we look forward to working with them again.

Steve Harris

Isle of Wight Group

Croydon Group

Colin Macarthur

Joan Zusich

We are very sad to report the death of Lucile Knight in November at the age of 91. Lucile, who was part French and part American, had Usher's Syndrome, and was instrumental in the formation of Hampshire Branch in the late 1970s.

She worked tirelessly for the charity for more than 20 years. We have many fond memories of Lucile and we offer our sincere condolences to her family.

We’d like to give thanks and a big We were please to send £2,500 to plug for sponsorship to students Ed the main charity in December but Jolliffe and Alex Liddell who are this was tinged with sadness at the 26

The RP Helpline 0845 123 2354

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NEWS IN BRIEF deaths of two of our long standing members, Norman Candy and Peter Leigh. Norman passed away in December and Peter Leigh in November.

We wish to thank both men publically for their service to the charity’s Croydon group and send our condolences to their families.

Peter had supported us since 1995 and Norman since 1997; they were both popular men and will be much missed. Our thanks go to both families who have donated significantly to RP Fighting Blindness in memory of their loved ones and our friends.

Morecambe March Peter Barnes RP’er Peter Barnes hiked across Morecambe Bay in the autumn, raising money for RP Fighting Blindness and The National Trust for whom Peter is a volunteer ranger.

Peter finished safely at GrangeOver-Sands (pictured) despite encountering quicksand along the way. As a result of his challenge we received donations totalling £650, so a big thank you Peter!

High Vibe for RP Anyika Barr

The short but powerful and insightful self help book “High Vibe” is available in paperback and Kindle versions on Amazon at www.tinyurl.com/highvibebook and author Anyika is donating 10% of sales to RP Fighting Blindness.

It’s a great little gift which stands out for its down to earth, lighthearted, semi-autobiographical approach – a recipe book for life.

Christmas Card Bonus Beryl Duggan Thank you to all who purchased Tina Wray’s beautiful and lovingly painted Christmas cards.

Hundreds of packs were sold with orders received from across the country and abroad. Tina’s talent and her husband Gary’s success in getting the cards laid out and printed for free has led to a profit for the charity of over £2,500.

email: info@rpfightingblindness.org.uk

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FEATURE

Soap Star to Run for RP Fighting Blindness RP Fighting Blindness looks set to enjoy some publicity and hopefully his fans’ generosity as James Farrar, who plays Liam Gillmore in the hit soap Hollyoaks, takes up the 26 mile London Marathon challenge on our behalf.

James is keen to support us as his sister Lucy has RP, and will be making an appearance at our marathon reception event after the race.

“I’m really looking forward to the challenge”, said James, and when we asked him why he’d chosen RP Fighting Blindness as his marathon charity, he simply replied “Anything for Lucy”.

Along with all our runners James will be met by a team of student Sports Therapists provided again

by Milton Keynes College. For some reason there was no shortage of volunteers from amongst the female students this year!

You can sponsor James and leave messages for him at http://www.justgiving.com/james cfarrar RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.

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

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Office Telephone 01280 821334