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Look Forward Issue 154 March 2015 Registered Charity No.1153851
Inside Glasgow Patient Information Day Page 3 RAG 2015 Page 4 Three Peaks Challenge Page 6 RPFB Annual Conference Page 8
RP Fighting Blindness Looks Forward!
Attitudes to Blindness Research Page 14
Run for Us 2015 is shaping up to be a full year, with our Page 22 Annual Conference to look forward to, the Three Peaks Challenge being organised, Regular Giving Update Patient Information Days being planned and a Page 24 whole host of fundraising events taking place across the country. A number of recent, smaller fundraising initiatives are gaining ground such as our Stamp Appeal and eBay for RP, and places have already filled up on community fundraising events such as the Virgin Money London Marathon. Read on to discover more about what we’re up to this year, and how you can contribute to our work.
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NEWS
Letter from the Chief Executive David Head, MBA By the time you read this, you may already be aware that I am stepping down as Chief Executive here at RP Fighting Blindness, so sadly this will be my last introduction to Look Forward.
the very best of success. I will be keeping in touch with all my close friends at the charity and supporting it as a member, donor and event participant. But it’s not all about me… this magazine is packed as ever with news and information about RP research, RP people and RP events. I hope you enjoy it and please do share it with friends and family - especially if you can encourage them to take part in some of our information days and fundraising ventures.
I’ve very much enjoyed my time here - nearly eight years - and it is with a sense of pride that I leave the organisation in a strong position with some fantastic projects underway, healthy With mixed emotions and my best finances, and a brilliant team of regards for the future. staff and supporters in place. There are some great plans lined up for 2015 and our 40th anniversary year in 2016, research continues to astound us all, and our information and support services are highly valued and respected across the Do you follow us on Facebook and eye charity sector. Reading that back, I find myself wondering why I am leaving! However, the time has come for me to take on a new challenge and I wish the charity and whoever is chosen by the board to replace me 2
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.
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EVENTS
Glasgow Patient Information Day, sponsored by Second Sight Now in their fifth year, our Patient speakers and presenters are Information Days are highlights in confirmed. This will be made the RP Fighting Blindness calendar. available on our website, will be circulated on our e-Bulletins and members in the locale of Glasgow will be contacted by post about the event closer to the time. Registration to confirm attendance for this event is essential; the registration through Bringing together patients, head office will be opened as soon clinicians, medical experts and as all details are confirmed. knowledgeable speakers, the Our Patient Information Days are Patient Information Days run in free to attend and refreshments and different locations across the a buffet are available for delegates. country so as to reach as many people as possible. Last year we Two further Patient Information saw them take place at Days are planned; one in September Southampton and Birmingham, and in Manchester, and another in we are excited to announce the first October in Bristol. Information and of this year’s Patient Information dates will be announced for these Days will take place in Glasgow on two events closer to the time. 12 May, at The Grand Central Hotel, This year’s Patient Information Day 99 Gordon Street, Glasgow, G1 3SF. programme is being formulated in A full programme for the day will be partnership with Second Sight, and made available as soon as all we thank them for their support. 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)
email: info@rpfightingblindness.org.uk
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EVENTS
RAG 2015
17 April 2015 – 19 April 2015
The RAG social and activity weekend regularly attracts over 100 attendees, some excellent medical speakers and a wide range of activities. RAG also aims to provide information and advice about living with RP, Usher Syndrome and many others. The next RAG is coming up soon on the weekend of 17th – 19th April at the Carousel Hotel in Blackpool and anyone affected by RP, their families and sight loss professionals are welcome.
Saturday 18th April
The Programme for the weekend is as follows. This could be subject to change:
12.30pm 2.00pm
9.30am
10.30am 11.00am
2.20pm
Friday 17th April 2.00pm 2.30pm
3.30pm 4.00pm
6.30pm 8.30pm
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Guests arriving and checking in Paul Macmillan from Action for Blind People with news about their services Tea and coffee Break Paul Macmillan will be available to speak to individuals, followed by free time. Dinner Evening entertainment Audrey Tilley and Tony Breso providing
Office Telephone 01280 821334
2.45pm
3.10pm 4.25pm 6.00pm 8.30pm
Barbara Norton - her experience and journey of acceptance Tea and coffee Break Jill from the Bendrigg Outdoor Pursuits Centre near Oxenholme Lunch Sue Drew from RP Fighting Blindness will give an update on the charity Medical speaker - Consultant Genetic Counsellor, Manchester Centre for Genomic Medicine, Central Manchester University Hospitals NHS Foundation Trust Medical speaker - Dr Thomas L Edwards PhD (Cantab), FRANZCO, Nuffield Laboratory of Ophthalmology, Oxford Q & A session with medical speakers Closing remarks Dinner Evening entertainment, “A night at the Races” themed evening.
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EVENTS Sunday 19th April 10.15am
10.30am 12.30pm
Farewell message to guests Group sessions Lunch
The costs per person are as follows:
Option 1
Option 2
Option 3
• Arrive Friday 17 April afternoon • Depart Sunday 19 April after lunch • Includes all RAG sessions, Friday dinner and entertainment, 2 nights bed and breakfast, Saturday dinner and entertainment, tea and coffee during breaks, and Sunday lunch.
• Arrive Saturday 18 April after lunch • Depart Sunday 19 April after lunch • Includes all later RAG sessions, 1 night bed and breakfast, Saturday dinner and entertainment, tea and coffee during breaks, and Sunday lunch.
• Single room £165 • Sharing double room £155 (PP) • Sharing Twin room £155 (PP) • Sole use of double room £175
• Single room £95 • Sharing double room £90 (PP) • Sharing Twin room £90 (PP) • Sole use of double room £100
• Attendance at Saturday medical research presentation only, plus tea/coffee, for £20. To book please email or telephone the RP Fighting Blindness office as soon as possible. Option 3 places are very limited due to the amount of space available.
A £50 deposit will secure a room (non-refundable). To book please contact the Carousel Hotel directly on 01253 402642, quoting RAG option 1
A £50 deposit will secure a room (non refundable). To book please contact the Carousel Hotel directly on 01253 402642, quoting RAG option 2
We are holding rooms at the hotel for an initial period so please book soon to avoid disappointment. www.rpfightingblindness.org.uk
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FUNDRAISING
Three Peaks Challenge 2015 Would you like take part in an amazing challenge, and help raise money for RPFB at the same time? The Three Peaks Challenge will run from 20 July to 25 July inclusive, and take on Mount Snowdon, Scafell Pike, and the mighty Ben Nevis. As the three highest peaks in England, Scotland and Wales, this represents an exciting challenge to both visually impaired and fully sighted participants alike. The total distance walked will be an estimated 26 miles with a total ascent of 9,800 feet. We are looking for people to join us on the challenge, with a mixture of visually impaired and fully sighted participants, but places available are limited! The fundraising target is very achievable at £1,300; this must be paid by the end of 2015. A £100 registration fee is also payable, which is separate from the sponsorship costs.
registration fee. These previous challenges include: London Marathons, The Sahara Trek 2009, Namibia 2010, Iceland 2011, The Coast to Coast 2012, The Tandem Challenge 2013 and the Sahara Trek 2014. Accompanying the party on the challenge will be David Head, RPFB’s current Chief Executive, a doctor and an experienced expedition leader. Added to these will be a local guide at each site for maximum safety. The planned itinerary for the challenge is below: Monday - Travel to Mount Snowdon Tuesday - Scale Mount Snowdon and travel to Scafell Pike Wednesday - Scale Scafell Pike Thursday - Travel to Ben Nevis Friday - Scale Ben Nevis Saturday - Travel home The challenge will be rounded off with a celebratory meal and a chance to relax with one another before the journey back down south!
The coach will depart from London on the morning of Monday 20 July, Those who have taken part in making its way northwards towards previous RPFB fundraising Snowdon, stopping at several prechallenges, and have raised their full sponsorship targets in the past, arranged pick-up points. The exact location of these pick-up points will are not required to pay the £100 6
The RP Helpline 0845 123 2354
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FUNDRAISING
be confirmed in due course. The “…Most of all, I’ll remember the process will be reversed on the way laughter. Regardless of tiredness, back, at the same points. weather, blisters or plagues of locusts, we always found a funny Hotel accommodation, coach side. I’m still smiling as I write this. transport and all meals except It was an incredible 10 days, and I evening meals will be included in the registration fee and am thrilled to have been part of it…” sponsorship payment. Breakfast “...one of the most remarkable and packed lunches will be fortnights of my life. Ten days of provided. Rooms will be twin, or highs and lows for us all double if appropriate. We would geographical, physical and encourage people to sign up in pairs due to this, but we are happy emotional - but, at the end of it all, an awe-inspiring triumph of to team people up for accommodation purposes. teamwork, friendship and RP Fighting Blindness aims to run a determination. As I said each of my major sponsored trekking challenge goodbyes over the course of the last 24 hours, I was reminded of no end each year; these have proved of times that each of you had without exception to be a great success, both from a fundraising inspired me, motivated me and perspective for the charity, and made me glad to be alive and part of personal perspective for the something special. So thank you all trekkers. Join us and you will be again...” committing to fundraise for the Visit the RPFB website to download charity but you will have plenty of time and support to help you hit the the Registration and Medical forms, sponsorship target. We'll be with or alternatively contact Michelle you all the way, and the rewards will Carter at Head Office on 01280 stay with you forever. 821334. She can also answer any questions you have about the trek You can read about our previous treks on the RPFB website under the and would love to receive your call fundraising pages. Comments from if you’re considering joining the previous trekkers have included: team! email: info@rpfightingblindness.org.uk
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EVENTS
The RP Conference 2015 As last year, the RP Annual Conference 2015 will be held at the Pullman Hotel on Euston Road, London. The hotel is just a few moments’ walk from both King’s Cross St Pancras and Euston stations, making it a convenient location for those travelling from afar. A buffet lunch will be provided. session of the day. Members of RP Fighting Blindness are welcome to take part at no charge together with a partner or guide (although donations towards event costs are always welcome of course!) Members, patients, family and friends, supporters, clinicians and researchers alike are welcome to attend the RP Fighting Blindness Conference on Saturday 20 June 2015 to share information, research news and everything RP. This one-day event is always an important part of the RPFB calendar, bringing together around two hundred people to hear from our top speakers, learn from each other, meet the RP Fighting Blindness team, as well as socialise and catch up with old friends. The event will also incorporate the charity’s formal AGM as the last 8
Office Telephone 01280 821334
Non-members are equally welcome at a cost of £30 each, which includes refreshments all day and the buffet lunch. The full programme for the day will be announced in due course, in Look Forward and on our website. For members and non-members alike, it is essential that places are booked, as seating and catering arrangements are made in advance. Please contact Michelle Carter at Head Office on michelle@rpfightingblindness.org.uk or call 01280 821334 to confirm the number of places required. Non-members will be invoiced.
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FUNDRAISING
Charity Nominations We’d like to ask all our members and supporters to think of us when they see open nominations for charity support in their local communities. If you are in a position to nominate RP Fighting Blindness for schemes such as a local business’ charity of the year, or cause of the month, we’d love you to suggest us. Such schemes often run in supermarkets or similar, but many local businesses do the same; this can be a great way of raising awareness of RP, the charity and our work, as well as generating funds. The company you work for might have a scheme whereby employees can nominate a charity to benefit from a particular event or over the course of a year; we can provide all the materials you need to facilitate this, from tshirts and posters, to collection buckets and banners.
happy to speak with the business in question, or event-holder.
We can assist you in your application if you wish, and provide statistics or general information about RP and the charity, and would be more than
Please contact Hannah Hickman by calling 01280 821344 or emailing hannah@rpfightingblindness.org.uk should you wish to discuss any aspect of charity nomination. www.rpfightingblindness.org.uk
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RESEARCH
Gene Therapy offers blindness hope A radical form of gene therapy that remodels eye cells into light receptors holds out the promise of restoring sight to people who are completely blind. The new approach is able to create replacement photoreceptors from cells that do not normally react to light.
In early tests on dogs with an inherited disease similar to the human condition retinitis pigmentosa, scientists were able to restore sufficient light sensitivity for the animals to distinguish between flashing and non-flashing lights. Blind mice given the same treatment became as good at navigating a water maze as normal mice. The research, reported in the journal Proceedings of the National Academy of Sciences, sets the stage for future clinical trials in humans with degenerative eye diseases. Two components of the "hybrid" treatment involve 10
The RP Helpline 0845 123 2354
a gene that alters non-light sensitive cells and an injected chemical "photoswitch". US lead scientist Professor Ehud Isacoff, from the University of California at Berkeley, said: "The dog has a retina very similar to ours, much more so than mice, so when you want to bring a visual therapy to the clinic, you want to first show that it works in a large animal model of the disease.� "We've now showed that we can deliver the photoswitch and restore light response to the blind retina in the dog as well as in the mouse, and that the treatment has the same sensitivity and speed of response. We can reanimate the dog retina." The new treatment employs a virus to insert a gene into normally non-light sensitive cells in the retina that gives them the potential to "see". The gene makes a protein that acts like a lock. When the right molecular key from the photoreceptor
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RESEARCH switch is slotted into the lock, light sensitivity is turned on. At present a new injection of the photoswitch has to be made every week to maintain its effect, since the molecule is naturally removed after a period of time. Co-author Dr William Beltran, from the University of Pennsylvania School of Veterinary Medicine in the US, said: "Use of such a clinically relevant large animal model allows us to begin tackling the next challenges on the road to translating this novel therapeutic strategy to human patients." The therapy is said to show promise because although diseases such as RP destroy the eye's photosensitive cells, other cells in the retina are often left intact and unharmed. They include bipolar and ganglion cells, which both transmit visual nerve signals but do not contain photoreceptors. In tests on mice, the gene was successfully inserted into almost every one of the rodent's million or so retinal ganglion cells. According to the researchers, this should be enough to restore useful vision. The scientists are also looking to see if the photoswitch can be used
to activate other receptor types, including some that might allow perception of fainter light. One of the leading scientists involved in the quest to find a treatment for RP in the UK said the research was "exciting". Professor Paul Bishop, consultant ophthalmologist at the Manchester Royal Eye Hospital and Chair of the Medical Advisory Board at RPFB, said: "Converting non-light sensitive cells in the retina into light-sensitive cells is an exciting new approach that has potential to restore sight in people who are blind from hereditary retinal degenerations" The charity's Engagement Manager Sue Drew said said: "This is highly-credible work which has been emerging in very recent years. The principles behind so-called 'optogenetics' are fascinating and as ever we are amazed by the research that is being carried out around the world. We will watch developments very closely and we will certainly be making our members and patients aware of this work. It is important to recognise that it is still at the stage of animal testing, but exciting nevertheless." www.rpfightingblindness.org.uk
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RESEARCH
Genomics England Project to fight genetic diseases A new genetics project could help "unlock a series of secrets about devastating diseases", the NHS says. Under the scheme, 11 Genomics Medicine Centres are being set up in English hospitals to gather DNA samples to help devise targeted treatments for a wide range of diseases. It is focusing on cancer and rare genetic diseases. The aim is to sequence 100,000 whole genomes within three years in order to develop new tests and drugs. Up to 25,000 cancer patients will have the genetic code of their healthy tissue compared to the genetic code of their tumour. What has been described as “a giant game of spot-the-difference” will then take place to identify the precise mutations in DNA that are causing a patient's tumour. This would allow targeted medicines to be developed. Meanwhile, 15,000 patients with rare diseases - including retinal dystrophies - will have their genome compared with those of their parents and grandparents. 12
The RP Helpline 0845 123 2354
Thousands of genetic diseases which are individually rare but combined affect large numbers of people - could be identified by finding mistakes in the three billion pairs of letters that make up our genetic code. The resulting knowledge could give patients an explanation for a disease that has plagued their entire life. Prof Graeme Black with whom we work closely at RPFB, and who will be part of the project in Manchester, said: "It's possible to sequence an individual's entire genetic make-up, their genome, in merely a few days where five years ago that was completely unimaginable.” The project will also link with the charity’s own “RP Genome Project”, with the centres involved (Leeds, Manchester, Oxford and UCL (London)) aiming to recruit patients for testing and inclusion in both programmes.
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FUNDRAISING
eBay for RP Since November 2014, RP Fighting Blindness has been accepting donations of items to sell on eBay, subject to eBay's usual restrictions. We’ve already had a few generous people donating items and we hope to encourage a few more people to join in too! eBay for RP means you can donate unwanted items to us, and we will sell them via eBay to raise funds for our work. Items for donation could include homeware, electricals, CDs, sports equipment, toys and games, fashion accessories and unwanted presents. If you’re planning a Spring clear out soon, please think of us!
This fundraising scheme is being run on behalf of RP Fighting Blindness by RPFB member John Churchill. He will be receiving, photographing and listing online the donated items - we would like to publically say thank you to John who will be giving a lot of his time to this venture.
The address to post items to is: eBay for RP One exception to items for donation 30 Sea Rd is clothing - the time and cost of Bexhill listing standard high street clothing East Sussex is unlikely to be worth investing in TN40 1ED from a fundraising point of view. In Should you have any queries saying this however, high-value regarding eBay for RP, please clothing (bike leathers, wedding dresses, ball gowns, leather jackets contact head office on etc) could well be welcome. Please 01280 821334. You can view these items currently listed for sale on contact us at Head Office if you have anything of this ilk and check behalf of the charity by visiting http://tinyurl.com/RPFBeBay with us. www.rpfightingblindness.org.uk
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RESEARCH
Blind Veterans UK ‘Attitudes to Blindness’ Survey To mark the 100th birthday of the charity Blind Veterans UK, the organisation has released the results of a survey called 'Attitudes to Blindness'. The survey compares how the public's perception of blindness has changed since the charity's foundation in 1915. According to the results, current views of blindness are overall quite positive, for example, 60 per cent do not see blindness as a barrier to being able to lead a happy and active life and 81 per cent thought that sight loss would not be an obstacle for blind or vision impaired people to start a new job or career.
last 100 years - thanks in part to the life-changing work of organisations and sight loss charities like Blind Veterans UK."
Some negative perceptions still exist however; half of those surveyed disagree that a blind person would be able to do the same job as well as a sighted person, and just under half believe These results show a huge contrast that they could no longer to the views the charity’s founder, participate in sport if they were to Sir Arthur Pearson, witnessed in lose their sight. 1915 as blinded soldiers returned Sue Drew, our Engagement from the battlefields of World War I. Manager commented, “There is of Blind Veterans UK's Chief Executive course still work to be done to Major General (Rtd) Nick Caplin educate and inform the public said: "These results show a major about the issues and challenges positive shift in the public's which face blind people, and perception of blindness over the surveys such as this highlight this.”
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The RP Helpline 0845 123 2354
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FUNDRAISING
Stamp Appeal Update As most of you will be aware, we relaunched our Stamp Appeal in 2014.
Many of you sent stamps into us at Head Office; we had so many in the last few months that the cupboard we were storing them in wouldn’t shut! We are changing the way we handle stamp donations; from now on if stamps could be sent directly to our handling agent Citadel Stamps (address below), we would be grateful. We were rather inundated with them over December!
We would love to see more supporters of our work get involved it’s so simple to contribute; simply tear off the stamps from your morning post and once you’ve filled a jiffy bag or similar, send them to our stamp agents directly! There’s no need to trim the paper off or steam them - in fact, they are worth more with 5 to 10mm of paper around each one. We’d love to be able to individually thank every person who has donated stamps, but due to the volume we’ve been receiving and the administration and cost of sending out thank you letters, it’s impractical. We want, however, every single person who has contributed to know how very grateful we are for their support.
Address for sending stamps: The appeal has been a real success RP Fighting Blindness Stamp as it costs nothing to run and Appeal requires very little input from the PO Box 6107 charity’s staff. So far the Stromness relaunched Stamp Appeal has KW16 9AB raised several hundreds of pounds pure profit for the organisation. Many thanks for your support!
www.rpfightingblindness.org.uk
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CASE STUDY
First novel published by RPFB member A controversial crime thriller was released in November by an RP Fighting Blindness member. Lionheart, the début novel of Ipswich-based writer, Robert Taylor, is available on Amazon and in book shops now. Robert, 55, came up with the initial concept for the novel four years ago, and saw it evolve following the infamous Norway killing spree of Anders Behring Breivik. At the time, Breivik attributed his actions to an “anti-Jihad crusader organisation” in the UK, led in part by a mysterious leader who called himself 'The Lionheart'. “I had already started, but all it took was that little bit of inspiration,” Robert said. “In the weeks and months that followed, I got carried away with my imagination and the whole story unfolded in front of me.” 16
The RP Helpline 0845 123 2354
Despite being registered blind, due to his RP, Robert worked tirelessly to complete the project. He added: “I've always wanted to write a novel - not necessarily to have it published, but to prove to myself that I can.” “There have been many times when I've had an idea and started putting something down in writing, but rarely has it got past a first chapter. Life just gets in the way. I don't know what it was, but with this it was different. I was discovering the storyline as I went along. When I started writing it, I had no idea where it was going to finish, so I always looked forward to writing the next chapter to see what would happen next.” Upon completion, Robert began
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CASE STUDY
looking for publishers, and just like all the great writers of years gone by, he had his set-backs before Book Guild Publishing decided to take him on. The novel follows the storyline of journalist, Sean Bryant, who at the beginning of the story has just submitted an article that threatens to expose an underground, extremely rightwing organisation. Led by the enigmatic 'Lionheart', whose identity is one of the big mysteries of the story, the organisation has intentions of infiltrating top government positions and believe they have the answer to 'society's undesirables' and minorities, including the blind. We wish Robert every success in his writing endeavours and look forward to hearing how his debut novel is received by the public! Lionheart is available now on Amazon, and you can follow Robert Taylor on Twitter; @RTaylorAuthor.
Recycle for RP!
Recycle your old mobile phones and inkjet printer cartridges to raise money for RP Fighting Blindness! Just pop your old mobile or used inkjet cartridge into one of our freepost envelopes and post it! It’s as easy as that! Please phone 01280 821334 to request freepost envelopes.
email: info@rpfightingblindness.org.uk
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ARTICLE
Vision Awareness Training in the North East by Ben Pullen, RPFB member As well as being a member of RP Fighting Blindness, over the last few years I have found an exciting and enlightening opportunity to forward the voice of visually impaired people. I am part of a small team of visually impaired people based in the North East which has set up a Community Interest Company called Eye Wish Access, which offers vision awareness training. Those of us who provide the training are not only qualified trainers but, uniquely, are all visually impaired. This means that we also bring first-hand experience of sight loss to training. As a disabled peoples user-led organisation (DPULO), we believe Eye Wish Access not only makes a positive contribution to breaking down organisational 18
Office Telephone 01280 821334
barriers, but also empowers visually impaired people. There is a mutual benefit in that services are opened up for visually impaired people, and organisations have an increased customer / service-user market. The company has two main focuses: 1) We provide bespoke vision awareness training to organisations in the public, private and third sectors. Our aim is to help organisations break down barriers which inhibit visually impaired people using their services Among organisations that we give regular training to are the social work students at Northumbria University, a range of social care
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ARTICLE We are now opening our Level 1 course, ‘Understanding Visual Impairment’, to all visually impaired people, even if they do not wish to become trainers. Our aim is to enable them to: • Find out more about how society can be changed and improved for people with sight loss. • Understand more about rights to services and opportunities. organisations, the Tyne and Wear Metro customer service staff, and staff in one of the Newcastle hospitals. Recently we have run workshops for Newcastle Cathedral staff and Durham University social work students. Feedback from organisations that have had our training is good and the number of organisations wanting our training is increasing.
• Understand how other visually impaired people are affected by their sight loss. • Feel more confident about explaining what they need. • Gain a Level 1 accreditation from One Awards if they wish to do so.
Our website has been specifically designed to be easily accessible for visually impaired as well as sighted people, and has full information 2) We also provide accredited about Eye Wish Access, who we are, training to visually impaired what we do and how our customers people to enable them to grow in have found our training. confidence and skill to become For more information you can visit vision awareness trainers in their own right. The training is at our website at three levels and is accredited by www.eyewishaccess.co.uk, or contact us by email at One Awards (the name of the info@eyewishaccess.co.uk or Open College Network’s North telephone 079 2286 4494. East Region). www.rpfightingblindness.org.uk
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NEWS
RP Fighting Blindness Membership We’d like to say a big thank you to everyone who is continuing to support RP Fighting Blindness this year as a member or subscriber. The membership subscriptions are a vital addition to our annual revenues and help us across many different areas of our work. For historical reasons, many of our members and subscribers annual fees were due in January. If this applies to you and you have not yet paid, please can we ask you to send your payment with the form below. A cheque should be made payable to RP Fighting Blindness for £20. Of course, if you pay by Direct Debit you do not need to take any action. You can transfer to Direct Debit by calling the office on 01280 821334. By the way, please note that after 01 May the membership and subscription fee will be £24. If you are not already a member you can join by calling the office or visiting our website and searching for “membership”. ✁ RP Fighting Blindness Membership Form Name: Address: Contact Telephone No. Please make cheques payable to RP Fighting Blindness and return to: RP Fighting Blindness, PO Box 350, Buckingham MK18 1GZ
RP Fighting Blindness Information & Support Facebook Group Did you know RP Fighting Blindness has an online Information and Support Group for people with RP and their families? Anyone who has the condition, or has an interest, can join. We have members from all over the world and the community is over 3,700 strong with lively topics being debated, stories being shared and tips for living with RP discussed. A number of other RP Fighting Blindness Facebook Groups also exist, including a Parent & Family Support Group and a British Asians with RP Group. Just search on Facebook and join up to connect with others from around the world!
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The RP Helpline 0845 123 2354
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FUNDRAISING
Tough Mudder 2015 Are you tough enough? If you want to raise money for RP Fighting Blindness this year while undertaking a fantastic physical challenge, look no further than Tough Mudder!
Tough Mudder is a 10-12 mile obstacle course designed by the Special Forces to test all-round strength, stamina, teamwork, and mental grit. A number of different course types are available, in different locations across the country to test your abilities! Tough Mudder is not a race. A Tough Mudder event is a personal challenge - the goal is simply to complete the course and you’re encouraged to help others complete too. It’s about team spirit! Everyone is welcome and we have guaranteed places! With 16 dates and eight venues across the UK, all you need to do
is choose your date, sign and return your form and get prepared. Just visit www.toughmudder.co.uk, find your event and cause, join the team and take on your challenge! By visiting the Tough Mudder website you can learn more about the events, see participant photos and get a flavour of the kinds of challenges awaiting you! For further information and registration forms contact either Michelle Carter or Karen Murfet at Head Office by calling 01280 821334, or emailing michelle@rpfightingblindness. org.uk. www.rpfightingblindness.org.uk
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FUNDRAISING
Run for us! RP Fighting Blindness runners take part in a range of different running events every year to raise funds for our work. From the Virgin London Marathon, to the BUPA London 10K to the Adidas Silverstone Half Marathon, there’s something for everyone!
Such events are popular because people can build up to a full marathon over time, training and competing in smaller races, before tackling a bigger challenge, such as a full marathon. We have dozens of runners joining us each year, raising many thousands of pounds, and we’d love you to join them in Team RP! Sight loss need not be a barrier to competing in running events guided running is proving more and more popular. If you’d like to know more about guided running, please contact the office. Organisations specifically set up to facilitate guided running exist and we work with them. Many events fill up quickly after registrations open - the Virgin London Marathon is a prime 22
The RP Helpline 0845 123 2354
example, with all our places for the 2015 marathon already filled. Running for us in such an event is an important commitment, often made many months before, so do consider carefully if you can spare the time and have the inclination to train and raise your sponsorship target to compete. Call either Karen or Michelle on 01280 821334 at the office to discuss running for us, should you have any questions. They can advise which races might be suitable to start with, and can supply RPFB branded running vests or t-shirts for you to compete in, as well as the paperwork and registration information. We look forward to seeing you running for Team RP in the near future!
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FUNDRAISING
World Record Skydive 2015
This year, on Saturday 20 June, RP Fighting Blindness will be part of the Skyline World Record for Skydiving. We want to help break last year’s record of over 320 skydivers jumping for charity in one day, and this is your chance to get involved!
With no previous experience required, a tandem skydive is a popular choice for thrill seekers. You’ll be attached to an instructor who is in complete control of your jump throughout so all you’ll need to do is kick back and enjoy the ride! If you would like to take part in a sponsored skydive for RPFB, all you have to do is raise £395 you’ll receive your jump absolutely free! A Tandem parachute jump is suitable for sighted and visually impaired alike. Email michelle@rpfightingblindness. org.uk or call the office if you want to discuss any aspects of this great fundraising activity.
North Staffs Accordion Club Fundraising The North Staffs Accordion Club recently held a fundraising event for RP Fighting Blindness, raising £1,451 for our work. Club member Phil Eardley was the master of ceremonies and we’re told did a great job of introducing the performers and keeping the whole evening running smoothly.
RPFB member Denise Leigh was also performing and told the audience about the condition and our work. There were refreshments, a raffle and performances from The Churnet Valley Male Voice Choir, as well as the accordion music on the night. We’d like to say a big thank you for this sterling effort and great total raised! www.rpfightingblindness.org.uk
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FUNDRAISING
Regular Giving Update As many of you will remember, we relaunched our Regular Giving scheme not so long ago, with the aim of increasing the number of people who donate to us each month via Direct Debit.
easy to manage. For you, it means being able to support research directly and help bring about new treatments, with the reassurance that Direct Debits give you control.
Even a small monthly donation to RP Fighting Blindness by Direct Debit can achieve something We’re incredible; if half of all RP Fighting delighted to announce that Blindness supporters gave £5 by this has been a Direct Debit each month the annual wonderful total would be £150,000, which is success, with approximately enough to fund an the charity additional major research grant now receiving every year. just over And because Direct Debits are so £40,000 per year from such donations. We’d like cost-effective to administer taking just a tenth of the time to to give our heartfelt thanks to all those who have decided to support process compared to Standing our work in this way. Orders - RP Fighting Blindness can For research teams, our supporters ensure that each monthly donation donating via Regular Giving means made by Direct Debit is used exclusively to fund research. no breaks in funding, so skilled scientists can continue their If you’re interested in supporting crucial work without interruption. us in this way, or have any queries For RP Fighting Blindness it means about becoming a Regular Giver, being able to say ‘yes’ to more please either visit our website or research grant applications as we simply call the office on know how much is coming in and 01280 821334. when; it also means reduced admin costs because Direct Debits are so Thank you for your support. 24
The RP Helpline 0845 123 2354