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Look Forward Issue 147 June 2013 Registered Charity No. 271729
Inside Mary Guest Tribute Page 3 Patient Information Day Page 6 Gene Team Update Page 10 The RP Conference 2013 Page 12
Community Fundraising Well done! 2013 has already seen some fantastic fundraising efforts from our members, more of which you can read inside. From running the Virgin London Marathon to our ever popular national raffle, we’re thrilled at how many of you have been getting involved to help the charity. The summer promises to be an eventful one for RP Fighting Blindness and if you want to find out how you can support us further, please read on!
Corporate Fundraising Page 14 Carrots NightWalk Page 17 Skydive for RP! Page 18 The RP Shop Page 23 New York Marathon Page 24
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NEWS
Letter from the Chief Executive David Head MBA It feels as though 2013 is just flying by and we’re steadily approaching the summer. I hope as you’re reading this the sun is shining and things are feeling a bit warmer! This issue is packed with our latest news, plus some exciting updates from our research projects. It’s been a busy few months for myself and the staff at head office in Buckingham, particularly with the success we enjoyed at the Virgin London Marathon in April (see page 9 for further details!). We have many exciting projects and plans underway including the 2013 RP Conference, Patient Information
Days across the country and many different fundraising events. I’m delighted you all continue to support our valuable work across both the medical research and community spheres. I very much hope you enjoy this issue of the magazine. Should you have any stories or think of something you would like us to cover in the Autumn edition, please email our Communications Officer Thomas O’Neill on tom@rpfightingblindness.org.uk with your suggestions.
National Raffle Tickets With your last edition of Look Forward you received ten of our National Raffle tickets. We’ve had a huge number of these back, raising thousands of pounds for the charity’s work, so thank you to all those who have purchased them, or sold them to friends and family. We’ve been inundated with requests from across the country for more, but due to legal reasons cannot print any more! We would ask therefore if you have any at home you don’t intend to purchase, please send them back to Michelle Carter at the office. 2
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NEWS
A tribute to Mary Guest, MBE Many of you will have heard by now the sad news that Mary Guest, a much valued and long standing member of RP Fighting Blindness, passed away on Thursday 28 March following a brave battle with cancer.
Mary was a familiar face to many of our members at events and had been involved with the charity from almost its inception in the 1970s. She served it in several different capacities over the many years she was active within the organisation, including as a trustee.
her name, which will contribute to Usher Research work. Please consider making a donation by visiting the page where you can also leave messages if you wish, which we will pass on to her sons. The Tribute Fund can be found at www.tinyurl.com/maryguest
Mary was also the RP Fighting Blindness representative to Retina International and served on its Management Committee for eight years, further proving her deep commitment to fighting retinitis pigmentosa.
Mary’s funeral in Stretton, Shropshire was attended by many, a tribute to how many lives she touched. We shall remember Mary fondly, as a dedicated member of RP Fighting Blindness who worked tirelessly to raise funds, promote our work and further our cause.
Over the years Mary received many prestigious awards for her work across a number of charities, most notably an MBE for services to people with a sensory impairment. We have set up a Tribute Fund in
We wish to extend our most heartfelt sympathies to her family and friends. Her loss is felt by everyone working for and with RP Fighting Blindness.
email: info@rpfightingblindness.org.uk
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FEATURE
Finding Form in the Cairngorms apprehensive, even scared, as I was sat with four other visually impaired adventurers, half of whom were a lot older than me.
© CNPA/Wee Epics
RP Fighting Blindness member Richard King shares an adventure in the Cairngorms with Look Forward.
In the morning we headed out to the Moray Firth for a chance to put our rock climbing skills to the test. Firstly though, we had to abseil down on to the pebble beach below. All the various 10m climbs had names and classifications such as “Snotty Nose” and “Rice Krispie Wall”!
In another day of action we took a drive out for our hike up to the top of Ben Rinnes; a whopping 2700ft, one of 221 mountains across Scotland Last year I came across an article known as “Corbetts”. A real challenge promoting five days of excitement in the beautiful Scottish Highlands; for us, but I soon found form using two walking poles to feel in front of abseiling, climbing, walking and my feet. During the day we’d paddling with the support of the Mountaineering Council of Scotland experienced three different types of weather: sun, driving rain and a cold near Aviemore, in the heart of the Cairngorms National Park. Having a wind - but how amazing it was! yearning for the outdoors I quickly The five day challenge is held reserved two places! annually and is open to any VIP After breakfast on the Monday we met our three highly qualified and experienced instructors and two volunteers, and chatted through how the course might unfold, weather permitting. At this time I realised I was not alone in feeling 4
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wanting to experience an incredible week. Sighted volunteers are available and work on a one-to-one basis. To learn more visit the Mountaineering Council of Scotland’s website www.mcofs.org.uk.
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NEWS
Alström Syndrome UK Scoops Prestigious Award
Alström syndrome is a rare genetic disorder causing obesity, hearing loss, diabetes, life threatening heart problems as well as RP. Abnormalities in the gene, ALMS1, have been identified as the cause. Kay Parkinson founded the charity Alström Syndrome UK (ASUK) in 1998 at her family home after her two children were diagnosed with this incurable disease. She has since seen the charity grow from strength to strength, supporting families, raising awareness, promoting research and fundraising. Kay (pictured above, left) was recently presented with the prestigious EURORDIS Patient Organisation Award 2013. This award is in recognition of the
extraordinary work and commitment to patient support and advocacy for people with Alström Syndrome. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries covering over 4000 diseases, and RP Fighting Blindness is delighted to offer its congratulations to Kay and her team. Alström Syndrome UK provides support for those affected by Alström Syndrome, their carers and professionals working with them. It offers help with gaining access to medical assessments with doctors who have expertise in understanding the many manifestations of Alström Syndrome. It also provides quarterly medical screening clinics and offers help and advice with educational, social and benefit problems and gives support to families who live with Alström Syndrome. If you would like further information about the work of Alström Syndrome UK, please visit www.alstrom.org.uk www.rpfightingblindness.org.uk
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EVENTS
Patient Meet The Researchers Information Day Weetwood Hall, Leeds 18 October 2013 RP patients and families are invited to our third annual Meet The Researchers and patient information day, this year to be held at Weetwood Hall, an excellent and readily accessible important centres. conference centre on the outskirts We are grateful to Mr McKibbin for of Leeds. including this event in a programme funded by the NIHR and Leeds The event is being delivered on 18 Teaching Hospitals, as it is October in partnership with Mr important to all of us to ensure that Martin McKibbin, Consultant good information is made available Ophthalmologist, and his team at to patients. As a result of this the Leeds’ St James University event is free of charge, though Hospital. numbers are limited so please reserve your place(s) as soon as As in previous years the event will possible. You can do this by include presentations from emailing or telephoning scientists and clinicians working on Michelle on 01280 821334 or retinitis pigmentosa and related michelle@rpfightingblindness.org.uk. retinal dystrophies, as well as question and answer sessions and The provisional programme runs the chance to meet the researchers from noon until 6pm, though this is informally over refreshments. subject to change as we finalise Topics will include genetics and arrangements with speakers. gene therapy, stem cell research, Weetwood Hall is a 15 minute taxi retinal implants, and the use of ride from Leeds station and 20 pharmaceuticals and will be minutes’ drive from junction 43 of presented by speakers from several the M1. 6
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EVENTS
Optrafair 2013 Hannah Hickman, Denise Rawden and Thomas O’Neill recently attended the Optrafair 2013 show at the NEC in Birmingham. Optrafair is the UK’s largest optical trade event and is attended by many working in the industry to gain updates, information and contacts in the sector. RP Fighting Blindness was keen to attend this year to scope out potential fundraising opportunities and learn about some of the latest developments in eye care. Exhibitors included lenses and
glasses frames manufacturers, pharmaceutical companies, healthcare providers and other sight related charities. A number of fascinating educational seminars were held throughout the day and the team felt they had learned a lot by its conclusion. Held bi-annually, the office team are looking forward to attending Optrafair 2015!
Castell Coch Choral Society Chief Exec David Head was privileged in being invited to attend a concert given by Castell Coch Choral Society earlier this year. The society has chosen RP Fighting Blindness as one of two charities to benefit from its concerts in 2013 and David attended to express our thanks in person for this generous gesture and to show our support. The society has been fundraising for several years and chooses two
charities per year to benefit from the proceeds of four concerts. It’s raised a total of over £50,000 so far over the years which is fantastic. RP Fighting Blindness is thrilled to be one of this year’s benefactors. The reason RP Fighting Blindness was chosen for 2013 is that it was nominated by one of the choristers who has RP herself. This personal link makes the support we are getting from the group even more special.
email: info@rpfightingblindness.org.uk
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RESEARCH
Sucampo Tests Glaucoma Eye Drops for Retinal Disease Several articles and stories have emerged recently about clinical trials in Japan and America using unaprostone isopropyl to treat retinitis pigmentosa and dry agerelated macular degeneration. A US company, Sucampo Pharmaceuticals, is progressing this line of research.
the product in the future assuming successful trials. The FDA has granted orphan drug designation to unoprostone isopropyl for treatment of RP as there are no drugs or therapeutic procedures currently approved for its treatment today.
Potential Whilst welcoming news of progress and in particular of the prospect of The drug is currently licensed in the phase III clinical trials, RP Fighting USA for the treatment of glaucoma. Blindness' medical advisers point out that there are several In a 2011 phase II trial for RP 112 patients were treated at 6 research pharmaceutical approaches to the treatment of RP under investigation centres in Japan. This trial was designed to test efficacy and safety and it is an area where commercial and involved varying doses as well interests can colour the press releases that are issued. as the use of placebos. David Head, Chief Executive at the As a result, in February the company announced an agreement charity, said "The fact that phase III for unoprostone isopropyl with the trials of any potential treatment for RP are planned and funded is good Japan Science and Technology news." Agency in which the Japanese government will provide the majority of funding for phase III costs for RP. Sucampo is codeveloping this with another company, R-Tech Ueno, and is hoping to file for FDA approval of 8
Office Telephone 01280 821334
The definition of phase III includes "expanded controlled and uncontrolled trials after preliminary evidence suggesting effectiveness of the drug has been obtained, intended to gather additional
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RESEARCH information to evaluate the overall oxidative stress but there is not a benefit-risk relationship of the drug clear mechanism for any and provide an adequate basis for neuroprotection. physician labeling". They also note that this approval The charity's medical advisers tell appears to be based on small us the drug is an approved antistudies done in Japan that have ocular hypertensive that can be been reported in the Japanese used to lower pressure in Journal of Clinical Ophthalmology glaucoma, though less potent than (and) so far there is not enough data others. There is some evidence that available to formulate an opinion as it can protect nerve cells from to the prospects for the future.
Trustees Approve Recent Reports At their recent quarterly meeting the trustees of RP Fighting Blindness, on the recommendation of the charity's Medical Advisory Board (MAB), approved interim reports from two of our ongoing research projects. At the University of Manchester Dr Forbes Manson is being funded to investigate the potential of chemical chaperones and proteostasis regulators to correct the mis-folding of proteins that lead to cell degeneration. Funding for year 2 (of 3) of this work has now been agreed based on the progress reported in year 1. RP Fighting Blindness normally
approves grants on a year by year basis, having initially agreed the full terms subject to satisfactory annual reports and progress from the research teams which are assessed by our MAB. In a similar way, year 3 finance was also approved for Professor Shomi Bhattacharya's ongoing project to characterise Spacemaker (SPAM), a protein encoded by the gene EYS (RP25) which is implicated as a cause of cell death in autosomal recessive RP. Professor Bhattacharya (pictured above) is based at the UCL Institute of Ophthalmology and was responsible for identifying the first known gene to cause RP (RP2) back in 1984. www.rpfightingblindness.org.uk
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NEWS
Priority Setting for Retinal Dystrophy Research Priority setting for RP research took a step forward in May at a meeting at The James Lind Alliance.
The JLA is a non-profit making initiative which has developed a methodology to identify and prioritise the top 10 uncertainties about a medical condition. The May meeting was attended by organisations, patients, parents, researchers, clinicians and healthcare professionals who worked to define this top ten in respect of RP research. The process had actually started in early 2012 with a major survey of people affected by or working with people with sight loss, which generated over 4,400 questions that respondents wanted to see answered. Over 2012, a meticulous process had focused this onto 63 questions in the category of retinal dystrophies for the JLA meeting to work with. Some questions were very broad, 10
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for example about the importance of actually finding a treatment and about making genetic testing effective. Some were very specific, for example about certain types of RP or particular threads of research work. They also included some questions with ethical implications, and many questions underscored the need for research into support for people with RP as well as the science of the condition itself. The very diverse group that had come together worked through a structured process managed by Katherine Cromer of The James Lind Alliance. Through discussions, heated debate, merging questions, rewording questions, discarding then retrieving questions, and finally achieving genuine consensus, the top ten were finally agreed. The next stage is for these to be written up together with an accompanying narrative. This information will give researchers, funders and healthcare professionals a tool to ensure that research addresses the areas that matter most to both patients and clinicians.
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FUNDRAISING
Cycling Challenge Organised by Doncaster St. Leger Rotary Club A team of six experienced cyclists are traveling from Southport on the west coast of England, to Hornsea on the east in June this year, in aid of RP Fighting Blindness. The fully self-funded team will follow the Trans Pennine Trail, which is approximately 215 miles long and mainly off-road. Made up of riders aged between 60 to 69 years old from Doncaster and Huddersfield, the group will pass by many towns and cities along their route including Liverpool, Runcorn, Warrington, Doncaster, Selby and Hull. Supported by a logistical vehicle and a medic, the team will average a traveling distance of just over 40 miles per day. Ian Lammie, a member of RP Fighting Blindness who has the condition, is part of the trail team which expects to raise in excess of £5,000 for their efforts. “We’re very excited to undertake this challenge and have been training hard. As someone with RP myself, I’m very keen to raise awareness of the condition, and assist in the charity’s ongoing work.”
The Doncaster St. Leger Rotary Club cycling team (from left to right) John Newborn, Robin Heyward, Ian Lammie, Anthony Dearden and John Hills. (Absent: Andrew Cormack)
“We’re always excited to learn about such fundraising activities on our behalf, and wish Ian and his team the very best of luck,” commented David Head, Chief Executive at RP Fighting Blindness. “RP Fighting Blindness is committed to helping fund research for retinitis pigmentosa, as well as providing ongoing support for those with the condition.” If you wish to sponsor Ian and his team on their coast to coast cycle challenge, please visit www.justgiving.com and enter Ian Lammie under ‘sponsor a friend’ and follow the links. If you live in the north and want to support Ian and the team in person, please contact head office and we’ll let you know their route! www.rpfightingblindness.org.uk
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EVENTS
The RP Conference 2013 The RP Fighting Blindness Annual Conference is fast approaching and places are filling up!
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, and socialise and catch up with old friends. The event also incorporates the charity’s formal AGM as the last session of the day. 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.
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 £30 each, which includes refreshments all day and a buffet lunch. For members and non-members alike, 12
Office Telephone 01280 821334
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.
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EVENTS Conference Programme
12:55 Reconvene
09:00 Exhibition open Registration open
13:00 Session 4: Scientific Speakers Introduced by Prof Paul Bishop, Chair, RPFB Medical Advisory Board
09:55 Conference Welcome David Head, Chief Executive 10:00 Session 1: Speakers Presentation: Collaboration in the Visual Impairment Charity Sector Jayne George, Director of Fundraising, Guide Dogs for the Blind Presentation: On Inspiration Annalisa D’Innella, Journalist and Playwright 11:00 Tea and Coffee Break (20 mins) With a chance to view the stands and chat 11:20 Session 2: The RP Award Presentations Sir Alan Rudge The John George Award for Volunteering (Muriel George) The RP Fundraiser of the Year (Sir Alan Rudge) The Lynda Cantor Founder's Award The Roger Green Award 11:40 Session 3: Speaker Broadening the Reach of RP Fighting Blindness David Head, Chief Executive
An Update on Retinal Implant Technology − Speech to be confirmed What Next For Genetic Testing and Gene Hunting? − Prof Graeme Black Treatments: What does the Future Hold − Prof John Marshall 14:00 Session 5: RP Question Time Chaired by Prof Paul Bishop, Chair, RPFB Medical Advisory Board An interactive session in the style of BBC Question Time. Your chance to quiz a panel of four eminent RP researchers and clinicians. For the panel, our keynote speakers above will be joined by: Ms Georgina Hall, Principal Genetic Counsellor Mr Michel Michaelides, Consultant Ophthalmologist (TBC) 15:00 Tea and Coffee Break 30 mins With a chance to view the stands and chat 15:30 Chairman's Conference Address Mr Don Grocott, Chairman of the Board
12:00 Annual Prize Draw Colin Mcarthur
15:45 Session 6: Annual General Meeting The formal business matters of the charity.
12:10 Lunch
16:45 Event close
www.rpfightingblindness.org.uk
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FUNDRAISING
Corporate Fundraising The ways RP Fighting Blindness works with companies to boost revenues.
community support services. Being aligned to recognised brands and companies also helps us secure further funding and adds weight to our own brand, vital in this difficult economic climate. How do companies and corporations benefit?
The organisation’s fundraising strategies have many different facets and we regularly approach corporations and companies for sponsorship, grants and funding. This work is very important to RP Fighting Blindness and will be increasingly so in the future. There are many different ways companies and individual employees can support RPFB. We have a dedicated team of professionals at head office to tailor individual packages dependent on the level of support. How does RP Fighting Blindness benefit? In short, the charity benefits because we’re given money to continue our work, whether that be our research programmes or 14
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Companies and corporations that support us benefit through promoting their corporate social responsibility externally and internally, which is good for both their workforce and customers. An improved public perception of a company can lead to increase in brand loyalty and sales and supporting organisations such as ours can attract higher calibre employees who are typically interested in organisations with a strong moral conscience. If you think the company you work for might be interested in supporting RP Fighting Blindness, please do get in touch with Hannah Hickman, Project Fundraiser on hannah@rpfightingblindness.org.uk or call head office on 01280 821334.
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FUNDRAISING As you will have noticed, this issue of Look Forward is simply packed full of great stories about our community fundraisers! Michelle Carter and the rest of the team at head office in Buckingham want to extend their heartfelt thanks and gratitude to you all. The money raised by these incredible efforts is very
valuable to the organisation and makes up a significant proportion of our revenues each year. If you’re interested in getting involved with fundraising, please do get in touch with Michelle by calling head office or emailing her on michelle@rpfightingblindness. org.uk
BUPA London 10k 10,000 metres of pure pleasure! the City of Westminster and the City of London. Runners pass many of London’s famous sights including: Admiralty Arch, Nelson’s Column, St Paul’s Cathedral, Mansion House, Bank of England, Leadenhall Market, The Monument, Millennium Bridge, Tate Gallery, Cleopatra’s Needle, London Eye, Big Ben, Houses of Parliament and Westminster Abbey. Buckingham Palace acts as the backdrop for both the start and finish. The BUPA London 10k is presented Good luck to all our runners and by the London Marathon. The race starts (and finishes) in The Mall and watch the website and our social follows a clockwise route around media channels for updates! email: info@rpfightingblindness.org.uk
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FUNDRAISING The RP Tandem Challenge Solos welcome too!
challenge will push you hard, but you will be 05-10 Sept 2013 well supported Following our recent announcement and everything about our tandem challenge, we’ve will be organised had a huge amount of interest for you. In return regarding this incredible you’ll be asked to raise £1,000 in opportunity! You can join us for an sponsorship for RP Fighting amazing 356 mile cycle ride around Blindness. England in September. This is a This is the charity’s unique and exciting challenge for first major cycle four solo riders and ten tandem challenge and pairs, so anyone can take part we’re very keen to whether visually impaired or not. make it a regular event. Places are Starting and finishing in Coventry limited so if you want more and taking in some of our safest and information or want to reserve most beautiful routes, the six day yours, contact us at head office!
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 16
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spots. We will organise everything including your B&B accommodation and transport out to the route each day. You’ll need to get fit, take on the challenge, and raise sponsorship of course. We only have limited places remaining so if this exciting island adventure appeals to you, get in touch soon!
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FUNDRAISING Carrots Night Walk 2013 Hike London, Cardiff, Birmingham or Glasgow for RP Research!
Following the success of the Carrots Night Walk last year in London, this year we’re working with Fight for Sight to organise a walking team in four major UK cities. We needed 90 walkers in total; Can you help us fill the last few places 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! Many dress as carrots or sport orange wigs during the Night Walk and a great atmosphere is guaranteed! Everyone who took part last year agreed that it was a fun and easy way to raise money for the charity and we’re excited to welcome several walkers from last year! 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 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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FUNDRAISING
Skydiving for RP Research! RP Fighting Blindness member Paul Challis has raised an impressive £1,119 for the charity through a sponsored Skydive. Paul’s mother has RP and he was keen to
contribute to our research funds. We want to thank him for his incredible achievement! Well done Paul!
Jump for Sight 2013 If you have ever wanted to do a parachute jump, here is your chance! RP Fighting Blindness is looking for hundreds of adventurous volunteers to make fundraising parachute jumps, and if you raise enough sponsorship, you jump for free!
There are three types of jump available: • an Accelerated Free Fall where you can experience the thrill of skydiving solo from up to 12,000 feet • a Tandem Skydive from 10,000 feet attached to a professional instructor and • a Static Line jump which is performed solo from up to 3,000 feet - and you can jump from any one of over 20 British Parachute Association approved airfields across the UK.
No experience is necessary as all training is given and if you raise from £360 (depending on the type of jump you choose) you will receive your jump for free. Call 01280 821334 or email michelle@rpfightingblindness.org.uk for further information 18
Office Telephone 01280 821334
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FUNDRAISING
Virgin London Marathon 2013 A great success for RP Fighting Blindness! RP Fighting Blindness enjoyed huge success at the London Marathon in April. We had 25 runners who will collectively raise £50,000, a fantastic achievement beating last year’s total considerably. James Briercliffe was our first to finish in a great time of 02:56! James Farrar, who plays Liam in popular TV soap Hollyoaks, came in at 03:43 and our fastest woman was Emma Lee with another excellent time of 03:45 On the day we had some brilliant media coverage, with an article about Jill Hendry running in the Sunday Express magazine and her being interviewed live on BBC TV by Denise Lewis. James Farrar got a shout out from one of the BBC commentators and RPFB got a mention! The charity’s social media were busy with members and staff alike tweeting and posting photos
and updates thoughout the day. We also held a Runner’s Reception after the Marathon, to meet and greet everyone personally, and to allow runners to unwind and meet up with their families. The food, drink, massages and showers were very well received! We would like to say a big thank you to our great runners and the volunteers who helped out on the day, including a team of sports therapists from Milton Keynes College who generously gave their time. The money raised from the marathon is hugely important to the charity’s work and we rely on your determination and stamina to raise it! If you would like to run in 2014 please contact Michelle on 01280 821334 - places are limited and are already filling up! www.rpfightingblindness.org.uk
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OUTREACH
The RP Helpline RP Fighting Blindness continues to provide support for people affected by retinitis pigmentosa at times of emotional stress and practical difficulty. The RP Helpline and the Telephone Befriending services are delivered by a team of dedicated volunteers, all of whom have experience of dealing with the condition themselves or within their family
volunteers, who undertake regular training, all either have RP themselves or are related to someone with RP. This ensures callers are talking to skilled and empathetic volunteers every time.
As many of you will be aware, the charity also provides an extensive informative website about RP, regular magazines and news bulletins, leaflets, factsheets, a film, social media and informative events, all developed to ensure people with RP have access to good quality information. We regularly distribute cards with the RP Helpline number and other contact information to hospitals and eye clinics to ensure we outreach to as many people as we can who may be affected by RP.
A training weekend is planned for August, where Helpline volunteers will be brought up to date with the very latest information about RP and ongoing research, as well as diversity training and telephone manner. The charity is dedicated to ensuring that all our fantastic ‘Helpliners’ feel confident and proud to staff the phone lines and be able to handle any query.
The Helpline answers some 1,000 calls and hundreds of emails each year, many from people who would not be able to access this type of support anywhere else. The 20
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As the charity reaches out to more racial groups and ethnic backgrounds, we would love to be able to place more volunteers on the Helpline who can speak other languages including Urdu, Hindi and Punjabi. If you think you can help, please do contact Denise Rawden on 01280 821334.
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EVENTS
RAG Weekend In April saw David, Denise, Tom and Sue join the Retinal Awareness (RAG) weekend in Blackpool. The three day long conference and social event was well attended by RPers from the north of the UK and beyond and as usual some great speakers had been arranged. A mix of presentation topics ranging from guiding skills to mountaineering holidays included a personal shopper from Debenhams explaining how their service assists VIPs and a speaker from Action for Blind People explaining benefit changes taking effect this year.
Mr. Martin McKibbin and Prof Mike Cheetham tackled questions from the floor in a buzzing research Q&A session on the Saturday so attendees could learn about the latest advances being made in sight loss research. Evening quizzes and dancing and great food meant everyone had a wonderful time and were able to connect with other people with RP in a relaxed way.
We look forward to next year’s RAG David Head, Prof Alison Hardcastle, weekend and hope to see you there!
The RP Awards 2013 The four RP Fighting Blindness Awards are an important part of the RP 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 May. 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 and 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. email: info@rpfightingblindness.org.uk
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NEWS IN BRIEF
Sue Drew, the RP Fighting Blindness Outreach Officer, recently attended a “sensory day” held at Thurrock Adult Community College. find out more about resources available to them in the low vision clinics and could test out all sorts of useful aids. Overall it was a very informative and busy day during which Sue met a number of people affected by RP, and was able to link with other organisations and health Exhibitors covered technology, care professionals working with mobility and orientation, employment, leisure and education. people with RP. Many organisations were As a result, RP Fighting Blindness represented, including RPFB, Guide will have an presence at another Dogs, RNIB, Macular Society, exciting ‘exhibition-style’ event in Diabetes UK, Tinnitus UK, Deafblind Dagenham. The Eye Health event UK, Sense and many more, including will take place on Thursday 13 June the Action for Blind People bus. at the Becontree Leisure Centre, Dagenham. If you would like further There was a Rehabilitation Worker information, please contact Sue on at the event, with a low vision display, where people were able to sue@rpfightingblindness.org.uk. It was for anyone with a sensory impairment and was designed to include the very best information for those who are profoundly deaf, hard of hearing, living with sight loss or registered as partially or severely sight impaired.
It is with great sadness we have to report the news of the death of Irene Robinson, who passed away after a short illness the 6 November 2012.
hand on street collections. For many years Irene attended the RAG meetings held at Blackpool and will be fondly remembered for her larger than life character.
For many years Irene held the post of secretary to the Belfast branch and she was always ready to give a
We offer our deepest sympathy to her brother Eric and to the rest or Irene's family.
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Office Telephone 01280 821334
93554 RP FB Summer 147 Newsletter R03 (for client only)_Layout 1 15/05/2013 12:26 Page 23
NEWS IN BRIEF The RP Fighting Blindness
Short Story Competition 2013 have you entered yet? Entries are coming in thick and fast! The rules are simple and it’s easy 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?
our judges and make them want to read on. Entries 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.
Full rules and more detail are available at Author Red Szell, writer Annalisa www.rpfightingblindness.org.uk or D’Innella and journalist Joe by calling 01280 821334. Shortlisted Churcher will be our judges, and entries will receive certificates and will be looking for originality as well comments from the judges. There as good writing skills. Your story will be prizes, trophies and can be about anything from your certificates for our three winners experiences or your imagination; and we will publish a selection of what’s important is that you grip the best stories on our website.
The RP Fighting Blindness Shop You can now purchase wristbands, badges and other items to support the charity online using a credit card, debit card or Paypal account. Included is a (very limited) stock of our tremendously popular 2011 and 2012 Christmas cards, available at
a discounted price of just £6 for a packet of 12 (6 each of 2 randomly chosen designs) including postage. Please help us clear the way for 2013 cards later in the year; the costs were paid by sponsors so all sale proceeds will support our work. Please do take a look at www.tinyurl.com/therpshop. www.rpfightingblindness.org.uk
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FEATURE
New York Marathon last few places available! The London Marathon may be over, but the New York Marathon is yet to come!
us. Minimum sponsorship of ÂŁ5,000 required for an RPFB allocated place. The ING New York City Marathon is one of the world's great road races, drawing more than 100,000 applicants annually. The race attracts many worldclass 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 is pleased to announce we still have just four places left available! Please do let us know if you would like to run for 24
Office Telephone 01280 821334
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! For further details and to register your interest please contact Michelle on 01280 821334 or email michelle@rpfightingblindness.org.uk 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)