Look Forward issue 151 - June 2014

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Look Forward Issue 151 June 2014 Registered Charity No.1153851

Inside AGM Notice to Members Page 2 Christmas Prize Draw Page 3 RP Fighting Blindness Annual Conference Page 4

The Summer’s Hotting Up for RPFB The year is flying by with lots more planned!

Summer 2014 will be busy for RP Fighting Blindness, with our Annual Conference and AGM just around the corner and a whole host of exciting fundraising activities taking place.

We have already completed the Sahara Trek and Virgin London Marathon, with further events taking place throughout the year. This issue of Look Forward is packed with updates about our fundraising and recent research news, as well as the RP Conference!

Setting Up a Local Group Page 6 Virgin London Marathon Page 20 Collection Can Amnesty Page 21 Corporate Supporters Page 24 Regular Giving Page 26

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NEWS

Notice to Members of RP Fighting Blindness Annual General Meeting The RP Fighting Blindness Annual General Meeting (AGM) will take place at 16:15 on Saturday 21 June 2014. All full members are entitled to attend, speak and vote at the AGM which will be at the Pullman Hotel, Euston Road, London, after the RP Conference.

Trustees standing for re-election:

This will be the inaugural AGM of the recently formed Charitable Incorporated Organisation and we look forward to welcoming members to this meeting.

Proxy voting

Agenda for RP Fighting Blindness AGM

1. Chairman’s welcome 2. Introductions 3. Apologies 4. Annual Report and Accounts for 2013 (in respect of predecessor charity British Retinitis Pigmentosa Society) Introduction followed by questions from the floor Resolution: to adopt the Report and Accounts for 2013 5. Resolution to appoint Davies Mayer Barnett as auditors 6. Resolution to reappoint the Trustees of the new Charitable Incorporated Organisation 7. Any Other Business 8. Chairman’s closing remarks

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Roger Backhouse Lynda Cantor MBE – Hon. President Janet Crookes – Treasurer Dr Elizabeth Graham Don Grocott – Chairman Stephen Jones Prof. John Marshall MBE Colin McArthur

Any member of the CIO may appoint another person as a proxy to exercise all or any of that member’s rights to attend, speak and vote at a general meeting of the CIO. You can appoint someone to act on your behalf by informing RP Fighting Blindness in writing. This must state your name and address, the identity of the person you wish to elect to act for you and the meeting at which you are giving them permission to vote on your behalf.

Confirmation of proxy must arrive by 21 June by post to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ Or alternatively emailed to info@rpfightingblindness.org.uk

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NEWS

Christmas Prize Draw!

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

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

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

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

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

1st Prize – £200 of High Street vouchers, as chosen by the winner 2nd Prize – £100 of High Street vouchers, as chosen by the winner 3rd Prize – £50 of High Street vouchers, as chosen by the winner Plus other great prizes!

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.

email: info@rpfightingblindness.org.uk

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EVENTS

The RP Conference 2014 As last year, the 2014 RP Conference is being held at the Pullman Hotel on Euston Road, London.

important part of the RPFB calendar, bringing together around two 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.

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!)

The hotel is just a few moments’ walk from both King’s Cross St Pancras and Euston stations, making it a convenient location for those travelling from afar. A buffet lunch will be provided.

Members, patients, family and friends, supporters, clinicians and researchers alike are welcome to attend the RP Fighting Blindness Conference on 21 June 2014 to share information, research news and everything RP. This one-day event is always an 4

Office Telephone 01280 821334

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

For members and non-members alike, it is essential that places are booked, as seating and catering arrangements are made in advance.

Please contact Michelle Carter at Head office on michelle@rpfightingblindness.org.uk or call on 01280 821334 to confirm the number of places required.

Non-members will be invoiced.

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EVENTS

Conference Programme 21 June 2014 Session 1 09:00 Exhibition and registration open 09:55 Convene and Conference Welcome (5 mins) David Head, Chief Executive 10:00 Speakers (75 mins) RP Fighting Blindness: The 2014 Version David Head, Chief Executive, discusses the changes made to and within the charity, and their impact Inspiration Annalisa D’Innella, RP patient and writer, gives an insight into what has inspired her success Emotional and practical support for those facing sight loss Speaker To Be Confirmed 11:15 Tea and Coffee Break (20 mins) With a chance to view the stands and socialise Please reconvene promptly for the second session

Session 2 11:35 Reconvene 11:40 The RP Fighting Blindness Awards (40 mins) Nominations and presentations The John George Award for Volunteering RP Fundraiser of the Year Award Lynda Cantor Founder's Award (RP Young Person) John Marshall Award for RP Science Roger Green Award for Special Contribution The RP Fighting Blindness Short Story Competition – Winner 12:20 Lunch (55 mins) A buffet lunch is provided Another opportunity to view the stands Please reconvene promptly for the afternoon session

Session 3 13:15 Reconvene 13:20 Guest Speaker (10 mins) 13:30 Scientific and Medical Speakers (60 mins) Introduced by Professor Paul Bishop, Professor of Ophthalmology and Matrix Biology at

Manchester University and Chair of the RP Fighting Blindness Medical Advisory Board The application of technology to the restoration and preservation of sight Professor Eberhart Zrenner Chair-Professor of Ophthalmology Institute of Ophthalmic Research, University of Tuebingen Prospects for stem cells as a therapy for retinal degeneration Professor Majlinda Lako Professor of Stem Cell Science Institute of Genetic Medicine, Newcastle University 14:30 RP Question Time (60 mins) An interactive session in the style of BBC Question Time Chaired by Professor Paul Bishop, your chance to quiz a panel of four eminent researchers and clinicians For the panel, our two keynote speakers above will be joined by Professor John Marshall MBE (UCL Institute of Ophthalmology and Moorfields Eye Hospital, UCL) and Dr Rachael Pearson (UCL Institute of Ophthalmology) Timings of subsequent sessions may be brought forward depending on the number of questions 15:30 Tea and Coffee Break (30 mins) With a chance to view the stands and socialise Please reconvene promptly for the final session

Session 4 16:00 Reconvene 16:05 Chairman's Conference Address (10 mins) Mr Don Grocott, Chairman of the Board 16:15 Annual General Meeting** (45 mins) The formal business matters of the charity 17:00 Event close **Annual General Meeting – agenda for this session can be found on page two.

This session covers the formal business matters of the charity.

Please note that though non-members are very welcome they will not be entitled to speak or vote on any resolution. Members of the charity not attending the main conference are still able to attend this session by arriving during the preceding tea break. Please collect your voting card on arrival.

Programme subject to amendments without notice.

www.rpfightingblindness.org.uk

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ARTICLE

Setting up a Local Group for RP Fighting Blindness

By Ron Pritchard, RPFB Member and long-time supporter I am fully sighted and joined RP Fighting blindness as a member after close family members were diagnosed with RP. My wife and I felt we would like to contribute more to the charity. We were made aware by head office of giving support through a Local Group; all you need is a couple of key volunteers, one to act as a focal point (a coordinator) another to take responsibility for any money transactions.

In August 2012 we completed the form Michelle Carter at head office supplied and formally registered our new Local Group with the charity. We are given material support in the form of fundraising materials, collection tins, information leaflets etc, and can ask for advice when we need it. The amount of time spent on various fundraising activities and the like is at our discretion.

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Holding fundraising events not only helps raise much valued funds for the organisation, but also raises awareness of RP as a condition and the charity’s work. We feel this is important to both maximise potential for support and to promote the successes of the charity to date.

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ARTICLE

help is greatly valued.

Any contribution is significant to us – if setting up a Local Group is impractical for you, why not approach a friendly shopkeeper and ask them to display a collection can? Or perhaps explore whether any local newsletters or magazines might be interested in carrying a piece about the charity’s We have made links with local work – Thomas O’Neill, the businesses, clubs and Communications Officer at head organisations, plus held fundraising office can assist with supplying an events and stalls at local fetes to article for you to submit. gain further support. Nothing is However small the contribution you prescriptive but guidance and make, collectively it will impact on suggestions are provided in the the success of the charity. Thank registration materials so you can you for reading this and we hope we choose how a Local Group might have inspired you. You are welcome work best for you. to contact us if you would like I believe it is a very exciting time to further information of our personal be involved with the charity; all the experience of setting up and efforts over the years by many maintaining a Local Group; just put people are now being realised with in a call to head office and they will the quality of research and clinical be happy to put us in touch. trials now being undertaken. The For further information about drive and successes of the organisation lies with the past and setting up your own Local Group, or if you have any of questions about present volunteers. Further help community fundraising, please and support will strengthen the contact Michelle Carter fight to improve people’s lives so at head office on 01280 821334 can we please encourage you to or email her on consider adding further weight in the fight against blindness as all michelle@rpfightingblindness.org.uk email: info@rpfightingblindness.org.uk

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RESEARCH

Optogenetics: International Research Project Approved by Trustees At their meeting in April the board approved a grant to allow Dr Jasmina Cehajic-Kapetanovic, a Clinical Research Fellow at the University of Manchester, to join a US project “Developing novel optogenetic tools for the treatment of retinal dystrophies.”

UK, and moreover support an up and coming researcher.”

Optogenetics involves gene therapy and the use of light-sensitive proteins in an attempt to restore visual function to the retina and has been demonstrated as having potential in animal models.

David Head, Chief Executive said The grant of “We welcome the opportunity to just over influence the development of a £63,000 relatively new line of research in will fund the UK, and Professor Flannery’s Dr Kapetanovic team are world leaders. This type and allow her to of exchange enhances academic work for a year capacity in the UK as well as with Professor contributing to specific research.

John Flannery, I look forward to reading Professor of Dr Kapetenovic’s reports.”

Neurobiology “I am thrilled to have received this at the University of California, USA. funding from RP Fighting There she will work on a project Blindness,” said Dr Jasmina aimed at targeting gene therapy to Cehajic-Kapetanovic. “This will subsets of bipolar cells in order to allow me to continue working on my progress her research on an research in a leading laboratory in optogenetic treatment for blindness. the United States, answering some The charity’s Medical Advisory of the key questions necessary to Board, in their report to the translate this research through trustees, said that the project was clinical trials into an effective “great value for money to help treatment for patients affected by create optogenetic research in the retinal degenerations.”

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Office Telephone 01280 821334

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RESEARCH

Clinical Genetic Testing and Genetic Research The RP Genome Project Some early news for our supporters essential in the development of has been released in respect of an clinical trials and future access to treatments. upcoming research grant.

The proposed programme is also intended to influence the way that The charity’s board have approved patients and patient data is in principle a substantial handled in the future, and to break investment in the further down the barriers that exist development of genetic testing between data used for research services for people with inherited purposes and data available to retinal dystrophies, and in clinicians. David Head, Chief streamlining the processes Executive at RP Fighting Blindness, involved in searching for the who has been working on the remaining unknown genes that development of the programme for cause sight loss. the last 18 months, said “It is so In a funding collaboration with frustrating that research teams Fight For Sight, the two charities working on gene hunting projects, are in discussions with the four or teams working on the leading genetic ophthalmology development of clinical trials, have research centres in the UK, at difficulty accessing patient data.

Leeds University, London (UCL We know there are data protection Institute of Ophthalmology), considerations, but most people Manchester University Eye would encourage and permit the Hospital, and Oxford University Eye sharing of their data if they knew it Hospital. The programme, details of was going to contribute so which will be announced very soon, significantly to the search for a is intended to encourage greater treatment. It is also frustrating that collaboration between the centres funding for genetic testing is and the sharing of patient data – difficult to access in some areas of www.rpfightingblindness.org.uk

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RESEARCH

the UK. Working across four centres very ready and willing to refer to a to develop a consolidated approach geneticist and others reluctant to will help with all of this.� allocate their limited budget.

The next stage is the agreement of protocols around the funding and launch of the programme, which will hopefully be launched at our conference on 21 June, or shortly afterwards.

Genetic Testing in the UK For patients across the UK, access to genetic testing is inconsistent, with some GPs and consultants 10

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We would encourage people who want to know more about the gene flaw in their family to ask for (and push for) a referral to a genetic clinic / genetic counsellor in the first instance. A genetic counsellor will discuss your family tree and the implications of genetic testing, and will refer you on for testing if it is agreed as being appropriate.

Genetic testing for inherited retinal

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RESEARCH dystrophies IS available on the NHS, however not all budget holders are willing to commission it, sometimes questioning its value, or clinical utility.

For those of you with access to the internet, the RP Patient Pathway, at www.rppathway.org.uk, includes pages on genetic testing and genetic counselling as well as other useful information about your Our view is that genetic testing can pathway through healthcare services. be helpful in many ways: • In some cases, management of your inherited retinal dystrophy can be improved • There is a psychological benefit to understanding what is happening to your body

In addition, a directory of regional genetics clinics is available at the Genetic Alliance website, at • It can help you make family plans http://www.geneticalliance.org.uk/ services.htm • A prognosis can be improved, making things like career planning and family planning easier • Knowing your gene flaw can identify you as a patient suitable for some clinical trials • You will be on appropriate databases as they are developed (see above article) • It can be of assistance in explaining to your family members the implications for them of your condition, or reassuring them that they will be unaffected www.rpfightingblindness.org.uk

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FUNDRAISING

Trek the Sahara 2014 Last month, David Head, our Chief Executive and 20 people trekked across the Sahara Desert in Morocco to raise funds for our work. The group, made up of both visually impaired and fully sighted trekkers, walked 100km in five days in temperatures reaching 38ºC, camping out under the stars and crossing challenging terrains carrying all their equipment.

They started by driving six hours into the desert with a guide and a doctor. Some of those who went were seasoned trekkers, having been on previous RPFB adventures, but for others it was their first time.

The Sahara is a challenging landscape to trek for anyone – it’s not just the relentless heat during the day, and the cold of the night, but the terrain varies massively, from soft deep sand, to hardened dried lake beds, to rocky stretches.

One of our trekkers found this out the hard way, with an emergency boot repair having to be implemented using trusty duct tape!

Despite a few of these minor inconveniences, the general consensus was that the trek was a great success. As is so often the 12

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case, the group bonded during their long walks and a strong team spirit prevailed, proving that RP was no barrier to adventure! (Although on a couple of occasions a thorny cactus caught out an RP’er or two!)

David Head said upon his return, “The last week has been truly remarkable. I’m always struck by the determination of all the trekkers when we run such a fundraiser, and this time was no different. This kind of feat proves that visually impaired people can hold up just as well as fully sighted when faced with a physical challenge! I’m thrilled that everyone finished the trek and that we have raised so much for RP research. I’m very much looking forward to the next one!”

Everyone completed the trek and we will have raised an estimated £30,000 from the group’s efforts. The next overseas RPFB trek will be in 2016, at a location to be confirmed!

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ARTICLE

Living without Paper

By Colin Bennett, RPFB Member I think that it is widely acknowledged that the internet, the world wide web, and in particular email have been of enormous benefit to people with sight problems. It has also been very useful for people with hearing problems. I have Usher Syndrome Type two. The widespread use of emails has largely rendered unnecessary the making of spoken telephone communications.

increasingly difficult for me to read these publications although I continued to find the contents compelling.

Slowly, I got behind with my reading. Then I started employing readers / scribes under a very useful scheme organised by the University of Sussex. These have been of enormous benefit to me and in fact I couldn't function without them. One of these readers is now typing this and she's giving me a how-could-you-expectIt might be that a short description anything-less-of-me smile! Of of how I coped with my declining course this work was paid for, sight in the last twenty years might although at moderate rates. ring a bell with some readers; It However, there came a time when I might also encourage some of you couldn't afford the time or money to examine your pattern of living to have all these publications and and to change it to make your day- other written material read to me. I to-day arrangements more suitable was soon in the ridiculous situation for your circumstances. I used to be where I didn't even open these a voracious reader. I used to magazines and they sat in a pile subscribe to many magazines, mostly still in their cellophane especially ones from amenity or wrappers. I took the decision to conservation bodies such as The come to terms with the fact that I Ramblers Association and The never would read these Wildlife Trust who would send me publications and entered into interesting publications of good arrangements with the societies publishing these magazines. I quality. As time went by it became www.rpfightingblindness.org.uk

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ARTICLE would continue my full membership but they would cease to send me their glossy publications and would only send me important notifications. With some organisations, such as Sense, I was able to arrange for their publications (in this case Talking Sense) to be sent to me solely in email form. This arrangement has improved my life in that I no longer feel that I'm on a treadmill and I no longer dread the postman now.

I've been campaigning for some years for bodies to have a spoken version of their publications. In the case of the Ramblers Association, I asked the very affable and efficient Editor, Dominic Bates whether he would consider putting their magazine Walk into audible form as well. He said: 'Funny you should say that because we've had this bloke Colin Bennett pestering us to do that for a couple of years and we have complied'. I hadn't realised that my pestering had been successful! I now get CDs quarterly from the Ramblers Association; all you have to do if you're a member of the RA is to ask for these CDs. I hope this information encourages you to communicate with 14

The RP Helpline 0845 123 2354

organisations you might belong to about this issue.

I used to receive all my utility bills etc. on paper. I have now requested, in most cases successfully, to receive these bills by way of emails. I'm trying to reduce the amount of paper I receive by post to a minimum and this has greatly improved my life and has also been welcomed by the forest of British Columbia.

Many of us will know the frustration in having a letter that one can't read. I must add that I use the accessibility features on my computer to enlarge the size of font and also to use 'reverse video' so I can get yellow or white text on a black background.

I am delighted to note that RP Fighting Blindness has fully entered the world of communicating with us via the computer. I know that it has been doing this for some years and I must commend them.

I hope this article will encourage you to take a look at the practical aspects of your life and perhaps improve it.

Smugly, from my nearly paperless office, Colin Bennett

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Essex & Suffolk Local Group Update By Steve Carrington, RPFB Member I would like to start in thanking everyone who has been fundraising over the last few months for the area and the Local Group; a big well done to you all. Here are just some of our recent contributors: Thank you to Alan Wells and his family for raising over £750 from donations at a funeral following the sad loss of a family member; our sincere condolences to you all for your loss.

Nathan Bunce (pictured) from Heybridge, Essex ran his first ever 10K run on the 11 May and raised just over £250, inclusive of Gift Aid. It was a very cold, wet and windy day at the start of the race but the sun came out at the end. Nathan, who has only been running for a number of weeks managed to complete the run in just over 46 minutes, so a very big well done to him! He is looking forward to running the London Marathon in 2015 for RP Fighting Blindness too. Anyone who wishes to sponsor him please contact me on 01621 853598 and I can pass on his details.

Our Annual ‘Stride For Sight’ event is scheduled for 07 September this year. This event is always a huge success thanks to the hard efforts of Ted and Margaret Newson each year. It starts at 9:45am sharp from the Harvester Shorehouse on the junction of Ness Road and Shoebury Common Road, Shoeburyness, SS3 9HQ. Free parking across the road available and the sponsored walk is as usually along the full sea front to The Ship at Old Leigh where a free Buffet will be laid on. Please contact either Margaret or Ted on either 01268 777436 or 07810 738184, or you can contact me, and I can then pass on or send you full information by e-mail if required. We normally raise a lot of money with this event so please come along and support us while having a great morning out too! www.rpfightingblindness.org.uk

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NEWS

The Retina International 2014 World Congress of Ophthalmology Don’t forget, the next Retina International World Congress of Ophthalmology is being held in Paris, 27 – 29 June.

Hosted by the Pullman Montparnasse Hotel, situated in the historical heart of Paris close to the Eiffel Tower, the 18th Retina International World Congress of Ophthalmology promises to be an interesting three days of

internationally respected scientists giving a full overview of the latest medical understanding of eye diseases.

Some sessions will be dedicated to particular conditions including RP, optic neuropathies and Usher syndrome. Delegates will also be offered tours of beautiful Paris in addition to the scientific programme.

For further information about the event, to view the preliminary programme or to register your attendance, please visit the Retina International website event page on www.retina2014.com

Bournemouth Marathon Last October Tracey Bentley and best friend Jacqui Burrows completed the Bournemouth Marathon, fundraising for RP Fighting Blindness. Tracey has RP herself, and Jacqui guided her around the route and the pair raised £2,700. This was a fantastic effort and we want to thank them for all their hard work! Tracey and her family do a lot of fundraising for the charity, and we appreciate their dedication and fundraising spirit.

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FUNDRAISING

RP Charity Photos If you would like to buy beautiful images to support our work, why not check out RP Charity Photos, a website set up by Phil Crookes. Phil is running this site to help raise funds for the charity and is selling his own images. There’s a great range to choose from and you can purchase them ready framed or ready mounted. Flower image greetings cards are available too, priced at £10 for six assorted cards, and are suitable for thank you messages, birthdays and other occasions. The website is easy to navigate and PayPal is available for transactions. Phil is kindly donating

all the money raised from the sale of his pictures to the charity, for which we are most grateful. You can explore his site by visiting http://rpcharityphotos.photoshelt er.com/

BUPA 10K We’d like to say a big thank you to everyone who took part in last month’s BUPA 10K run for RP Fighting Blindness.

This year Michelle Carter, RPFB’s very own Events Coordinator took part too, and take it from us, she’s been training hard! The Race started on The Mall and finished on Spur Road opposite Buckingham Palace. The runners followed a

clockwise route around the City of Westminster and the City of London, passing many of London’s famous sights including Nelson’s Column, St Paul’s Cathedral, Millennium Bridge, the London Eye, Big Ben, the Houses of Parliament and Westminster Abbey. It’s a great event so if you’d be interested in taking part in the future, contact Michelle at head office for further information!

email: info@rpfightingblindness.org.uk

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FUNDRAISING

Community Fundraisers – Thank You! It’s been a busy few months at the RPFB office thanks to many dedicated community fundraisers getting involved in events! We would like to say a massive thank you to every single one of our fundraisers; your hard work, commitment and support really does make a difference.

Just a few examples of recent fundraising events include: Kidsworks Soccer School, Twickenham, raising over £1000 by offering free classes and Annette Beman organised a concert and raised £300. Lawson Fuses, Ponteland, held an Easter Raffle with ticket sales bringing in £137.00; the 13th year they have supported RP Fighting Blindness.

Shaun Hopper and Julie Stevens took part in the Brighton Run raising over £500 with more on the way and Geoff Kennett held a quiz and donated £150. Finally, those runners who took part in the Adidas Silverstone Half Marathon, you know who you are and what you achieved on that cold, windy and wet day!

We can’t thank everyone who fundraises for us on this page, because there are so many of you selflessly donating your time and energy for our cause, but please be aware we value all your individual efforts! Please do carry on with your cake sales, book swaps, sporting events, quizzes, dress down days and fun days to help beat RP!

Jump for Sight – Good Luck!

We would like to wish a big good luck to all those taking part in the world record sky diving attempt on Saturday 14 June across UK airfields!

This amazing feat is aiming to break the world record for the most number of people jumping at the same time. We have 15 people taking part fundraising for RPFB and wish them well and good weather!

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Office Telephone 01280 821334

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FUNDRAISING

Carrots NightWalk RP Fighting Blindness will again be joining Fight for Sight on the Carrots NightWalk for 2014 and we really would love you to be part of the team! Join us in September 2014 and raise money specifically for research grants for RP.

In addition to the popular London walk, we will also be walking in Birmingham, Cardiff and Glasgow and participants can choose between a six or a 15 mile walk. You can find information about the

different regional events, the timings and routes on the Carrots NightWalk page on our website.

Each walker is asked to raise a minimum of £250, which will be matched by Fight for Sight, so that’s £500 per walker! Registration is open with forms available from michelle@rpfightingblindness.org.uk

New York Marathon 2014 The ING New York City Marathon is one of the world's great road races, drawing more than 100,000 applicants annually.

It attracts many world-class professional athletes, not only for the more than $600,000 in prize money, but also for the chance to excel in the media capital of the world before two million cheering spectators and 315 million worldwide television viewers. As any one of the more than 700,000

past participants will attest, crossing the finish line in Central Park is one of the great thrills of a lifetime. RP Fighting Blindness has been allocated a number of places for this year’s race, taking place on Sunday, 2 November, 2014.

If you’d like to be part of Team RP and run the New York Marathon to help raise money for our work, please contact Michelle Carter on 01280 821334 or email michelle@rpfightingblindness.org.uk www.rpfightingblindness.org.uk

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FUNDRAISING

Virgin Money London Marathon 2014 2014 proved another successful year for RP Fighting Blindness at the Virgin London Marathon. The weather was on our side this time and the spectators enjoyed the sunshine – although the same can’t be said for some of our sunburnt runners!

We had some 28 runners in RPFB colours this year, with one of our number breaking a world record by running dressed an eye ball! Emma Denton from Gloucestershire broke the Guinness World Record for the fastest woman to run the marathon dressed as an organ and was shown on BBC television for her efforts!

We had some great times come in, with four of our runners coming in at under four hours! We held our Runner’s Reception after the marathon, to meet and greet everyone personally, and to allow everyone to unwind and meet up with their families. The food, drink, massages and showers were very well received! Colin McArthur, RPFB trustee, and his wife Linda came to lend their support and thank the 20

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runners on behalf of the charity.

A team of sports therapists from Milton Keynes College generously gave their time for free by providing sports massages for our competitors. We were also joined by personal trainer Christopher Kelly, of Kelly’s Coaching in Milton Keynes who had an information stand and shared training tips with runners and potential runners for next year’s event.

We want to say a huge thank you for everyone’s efforts. This year we will have raised in the region of £50,000 – a truly impressive amount. The money raised from the London Marathon each year is hugely important to the charity’s work and we are very grateful for the training and hard work our runners put in, as well as the generosity their sponsors show.

If you’re interested in running for RP Fighting Blindness at the 2015 Virgin London Marathon, please contact Michelle Carter at head office on michelle@rpfighting blindness.org.uk. Places are limited and are already filling up!

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FUNDRAISING

Collection Can Amnesty RP Fighting Blindness has always been good at promoting itself; right from the early days we have had a range of materials, both for outreach and fundraising, to spread our name and cause, which have always been freely available to you, our members.

As a result there is a huge amount of older resources around the country – and we now need to make sure everything you are using to support us is accurate and up to date.

Following the adoption of our new charity number (1153851) with us changing to a Charitable Incorporated Organisation, it is important that we cease using older materials displaying the previous one (271729), as a legal requirement. This includes, but is not limited to headed paper, compliments slips, leaflets, tabards, badges, caps, stickers, cards, collection tins, collection buckets, banners, posters and flags.

This is why we’re running a Collection Can (and anything else you might have at home!) Amnesty.

We would ask that you please return to us anything that you have which has the old charity number on it and we will supply new, current versions. It is essential that we

move through 2014 with the new charity number being universally adopted across all materials.

Registered Also, any older Charity No.1153851 t-shirts, running vests or other items of clothing or promotional materials you may have with our old logos on, please return for us to supply you with up to date versions. This includes items with ‘The British Retinitis Pigmentosa Society’ or ‘BRPS’, printed on them.

We are keen to run everything solely under the RP Fighting Blindness brand so as to maintain and build further our presence in the sector, with patient groups and the general public. Every time the old name or logo is incorrectly used, it dilutes our position and recognition. By working under one brand, everyone’s efforts are concentrated to promote the charity’s work and our place within the sight loss community.

Should you have any questions, or perhaps have too much to return to make posting practical, please don’t hesitate to call either Thomas O’Neill or Michelle Carter at head office on 01280 821334. We thank you for your cooperation in this matter.

www.rpfightingblindness.org.uk

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ARTICLE

Lighting and Lightbulbs – How the Right Mix Can Help • Round paper shades are RP affects different patients in different ways, so a ‘one sizes fits good at diffusing light into all’ solution to lighting simply is not the room evenly. possible. Below are some tips to • Up-lighters are good because maximise lighting in your home. they bounce light onto the ceiling The below was reproduced with and back into the room. kind permission of The Macular • Avoid spotlights. They can cause Society. confusing bright and dark patches. They also get very hot and can cause glare.

A 65 year old person needs at least twice as much light than they needed at 21. If you have poor vision as well then good light is vital. Some people who think they need low vision aids, actually just need better lighting.

• Try to make the lighting similar in all rooms so that you don’t have to adjust to new light levels as you move about the house

Light bulbs

Traditional tungsten light bulbs are being phased out because they get General lighting around the home hot and used a lot of energy. To needs to be bright and even without begin with, many people did not like, causing glare. low energy bulbs. Newer versions however are much better; they are • Have several light sources around the room rather than one quicker to warm up and are available in a wider range of brightness bright light in the middle of the levels, shapes and fittings. room. Try moving them about until you get an even spread of Look for the ‘lumen’ level which is light and no dark corners. an indicator of brightness. A lumen

General lighting

level of 600 is roughly equivalent to • Shade bulbs so that the bulb itself cannot shine into your eyes. an old 60 watt bulb.

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The RP Helpline 0845 123 2354

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ARTICLE

• Choose bulbs with a pearl or frosted finish to diffuse light evenly. Clear bulbs can create a harsh light and confusing shadows.

• Halogen lighting produces a very bright, white light but gets extremely hot. Avoid the narrow beam spotlights and beware when changing halogen bulbs; use a cloth – the natural oil on skin will damage the bulb.

Other tips to improve general lighting and contrast: • Open the curtains wide and keep the windows clean!

• Fluorescent tubes produce less heat and use less energy but are • Remove net curtains. usually only used in kitchens.

• Use vertical or roller blinds to They should be fitted lengthways control the amount of light in a room to distribute the light coming in and prevent it shining as evenly as possible. in your eyes.

Bulbs also come in a range of • Wearing blue blocker filter lenses colour ‘temperatures’. Different in your glasses can help improve people prefer different colour contrast and reduce glare temperatures. Bulbs which have a This is just a selection of the tips cool colour temperature give off a blue-ish light. Warmer colour bulbs and information that the Macular Society provide about lighting and give off a more yellow light. Colour temperature is measured in Kelvin light sources. If you’re interested in (K). The higher the K level the cooler learning more about this topic, visit the Macular Society’s website on the appearance of the light. The macularsociety.org or give the RPFB range 3500K-4000K is considered Helpline a call on 0845 123 2354. neutral. www.rpfightingblindness.org.uk

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FUNDRAISING

Corporate Supporters We are very grateful to the following companies for supporting RPFB under their charity of the year schemes this year. Such employee led fundraising really helps boost our funds as well as being great fun for staff and encouraging positive employee morale for the companies involved. To find out more about how you can support the charity in this way please call the office on 01280 821 334 and ask to speak to Julie Child or Hannah Hickman.

Big Yellow Self Storage We are excited to announce our partnership with nationwide self-storage organisation, Big Yellow Self Storage. The company has adopted us as their Head Office's Charity of the Year from April 2014. We were kindly nominated by Sharon McCarthy, Marketing Executive, who has previously supported RPFB through running events. She has already run two half marathons in Team RP colours, as well as the London marathon in an inspiring time of 3.59.56 in April this year!

We were chosen in a vote by the employees of Big Yellow Self Storage's Head Office in Bagshot; the company will be raising funds for us through a range of fun employee events and have already

24

Office Telephone 01280 821334

raised funds through a Grand National Sweepstake, a coffee morning / afternoon tea and are currently running a World Cup Sweepstake and have raised a fantastic ÂŁ4,494.22 since April!

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FUNDRAISING

Abbott Diagnostics in Dartford, Kent

the past. Later this summer he and another Abbott colleague Danielle Brown will be taking part As part of their in a Guinness World Record Skydive Attempt for us on 14 June! two year partnership with RPFB, RP Fighting Blindness funds Abbott medical research into retinitis Laboratories have already held an Easter raffle for us at their Dartford pigmentosa and also offers a range of information facility earlier this year and and support followed that up with a “Bake Off” services to patients in late May. RPFB staff have been and their families. given the delightful task of tasting and choosing winners from the edible delights whilst Abbott employees will be parting with their cash as they ‘donate for cake’!

Abbott employee and RPFB member Mark Baxter is a tireless fundraiser for the charity, undertaking challenges such as the 2005 London Marathon and the Sahara Trek 2009 on our behalf in

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

Social Media Do you follow us on Facebook and Twitter?

Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity.

www.rpfightingblindness.org.uk

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FUNDRAISING

Regular Giving to RP Fighting Blindness These are exciting times for blindness research, with promising developments in multiple areas of investigation, from utilising stem cell innovations to prolonging antioxidant capacity.

RP Fighting Blindness committed to funding four such investigations in late 2013 and – with your help – we would like to fund even more in the future. By providing more support, to more scientists, more regularly we intend to get closer to finding new treatments and ultimately a viable cure – so that a time will come where generations of families don’t have to fear losing their sight.

Even a small monthly donation to RP Fighting Blindness by Direct Debit can achieve something incredible. If half of all RP Fighting Blindness supporters gave £5 by Direct Debit each month the annual total would be £150,000, which is approximately enough to fund an additional major research grant every year.

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The RP Helpline 0845 123 2354

"I’m a single mum and I’ve got two girls, Niamh and Ciara, both with recessive RP. Research is investing in their children’s future" Lisa McDonagh

And because Direct Debits are so cost-effective to administer – taking just a tenth of the time to process compared to Standing Orders – RP Fighting Blindness can ensure that each monthly donation made by Direct Debit is used exclusively to fund research.

Please will you help us to accelerate research today?

A Direct Debit form follows this article; please do consider supporting our work in this way. We would like to say a big thank you to everyone who has so far signed up to Regular Giving this year; your support is greatly valued.

97101 RP FB Summer 151 NL R03_Layout 1 28/05/2014 10:49 Page 27

Please help RP Fighting Blindness to support research every month Please pay RP Fighting Blindness the monthly sum of (please tick) £3 each month

£5 each month

Other (please state) £

P.T.O to Gift Aid it

£10 each month or

2 0 1 4

Direct Debit start date: 0 1

Name ..............................................................................................................

Address .......................................................................................................... ................................................................................ Postcode ........................

Instruction to your bank or building society to pay Direct Debit Name and full postal address of your Bank or Building Society To: The Manager .......................................................................

Bank/Building Society Address ....................................................................................

Service User Number 6

9

1

2

1

3

CAF, Kings Hill, West Malling, Kent, ME19 4TA

................................................... Postcode ................................

Name(s) of Account Holder(s) Name #1 ....................................................................................

Name #2 ....................................................................................

Bank/Building Society account number

Instruction to your Bank or Building Society Please pay CharityDonation Direct Debits from the account detailed in this Instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this Instruction may remain with CharityDonation and, if so, details will be passed electronically to my Bank/Building Society.

Signature(s) Branch sort code -

.........................................................

-

.........................................................

Banks and Building Societies may not accept Direct Debit Instructions from some types of account This guarantee should be detached and retained by the Payer

The Direct Debit Guarantee. Â&#x2021; 7KLV JXDUDQWHH LV RIIHUHG E\ DOO %DQNV DQG %XLOGLQJ 6RFLHWLHV WKDW DFFHSW LQVWUXFWLRQV WR SD\ 'LUHFW 'HELWV Â&#x2021; ,I WKHUH DUH DQ\ FKDQJHV WR WKH DPRXQW GDWH RU IUHTXHQF\ RI \RXU 'LUHFW 'HELW &KDULW\'RQDWLRQ ZLOO QRWLI\ \RX WHQ ZRUNLQJ GD\V LQ DGYDQFH RI \RXU DFFRXQW EHLQJ GHELWHG RU DV RWKHUZLVH DJUHHG ,I \RX UHTXHVW &KDULW\'RQDWLRQ WR FROOHFW D SD\PHQW FRQ¿UPDWLRQ RI WKH DPRXQW DQG GDWH ZLOO EH JLYHQ WR \RX DW WKH WLPH RI WKH UHTXHVW Â&#x2021; ,I DQ HUURU LV PDGH LQ WKH SD\PHQW RI \RXU 'LUHFW 'HELW E\ &KDULW\'RQDWLRQ RU \RXU %DQN RU %XLOGLQJ 6RFLHW\ \RX DUH HQWLWOHG WR a full and immediate refund of the amount paid from your bank or building society - If you receive a refund you are not entitled to, you must pay it back when CharityDonation asks you to Â&#x2021; <RX FDQ FDQFHO D 'LUHFW 'HELW DW DQ\ WLPH E\ ZULWLQJ WR \RXU %DQN RU %XLOGLQJ 6RFLHW\ :ULWWHQ FRQ¿UPDWLRQ PD\ EH UHTXLUHG Please also send a copy of your letter to us.

97101 RP FB Summer 151 NL R03_Layout 1 28/05/2014 10:49 Page 28

Make your gift worth 25% more at no extra cost Using Gift Aid means that for every £1 you give, RP Fighting Blindness will receive 25 pence from HM Revenue & Customs Yes, I am a UK taxpayer* and wish RP Fighting Blindness to reclaim tax on all my donations from 6th April 2008 OR ____/____/____ (please enter alternative date from which your donations are eligible) and any future donations until I notify you otherwise.

7R TXDOLI\ IRU *LIW $LG ZKDW \RX SD\ LQ LQFRPH WD[ RU FDSLWDO JDLQV WD[ PXVW DW OHDVW HTXDO WKH DPRXQW WKDW DOO FKDULWLHV DQG &RPPXQLW\ $PDWHXU Sports Clubs (CASCs) that you donate to will reclaim in the appropriate WD[ \HDU 9$7 DQG &RXQFLO 7D[ GR QRW TXDOLI\ The tax reclaimed will be used to help fund RP Fighting Blindnessâ&#x20AC;&#x2122;s work Please print full name of individual making this declaration: __________________________________________________________ No, I am not currently a UK taxpayer.

Should your details or circumstances change please let us know and we will amend our records. Thank you.

Please return to: RP Fighting Blindness, PO Box 350, Buckingham, MK18 1GZ Registered charity no. 1153851