Spring Magazine 2011: Issue 138
● Research awards – over £450,000 awarded ● Charles Bonnet Syndrome ● Orphan drug designation for rhodopsin-linked RP ● Your fundraising successes – football, social events, & more ● Make your nominations for the RP awards 2011! ● Entertainment and audio description ● Join us for walking, trekking, running and singing adventures! 1 Keep helping! Propose Membership to Friends & Family!
Contents Letter from the Chief Executive .. .. .. .. .. Take part in the Census .. .. .. .. .. Charles Bonnet Syndrome .. .. .. .. .. Research Grants give a Kick-Start to 2011 .. .. .. Research Leads to Orphan Drug Designation from EMA RP awards 2011 .. .. .. .. .. .. Fundraising Successes .. .. .. .. .. .. Calendar Dates .. .. .. .. .. .. Branch News .. .. .. .. .. .. Technology and Audio Description .. .. .. .. Spring Puzzle .. .. .. .. .. .. RAG Weekend 2011 .. .. .. .. .. .. Fundraising and Events .. .. .. .. .. ..
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A polite reminder to members whose annual subscription was due on January 1st. This is likely to apply to you if you joined prior to 2009, when we had a fixed membership year. If you still need to, please send a cheque to the office for your payment of £20, or make payment online by going to our website www.brps.org.uk and clicking on the link marked “pay my member sub” on the right hand side. Please consider adding a donation to your subscription. Any additional amount helps us deliver our support services and RP research programme. Thank you very much! About RP Fighting Blindness (Charity No. 271729) We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. Our Helpline is on 0845 123 2354 or at helpline@brps.org.uk. Our contact details: PO Box 350, Buckingham, MK18 1GZ, Tel: 01280 821334, Email: info@brps.org.uk 2
Letter from the Chief Executive David Head MBA
Dear Members amount already for 2011 on the strength of last year’s income.
Welcome to your Spring RP Fighting Blindness magazine, the first issue of 2011.
This edition of your magazine is a very full one again - there is a lot going on! There is also a reminder of our annual Members’ Conference in London and I’d really like to encourage you all to mark Saturday June 25th in your diary. This free event will cover a lot of important issues as well as present a chance for you to meet and ask questions of some of our researchers.
Some of our recent work has been reviewing 2010 and completing the accounts and reports for the year, and I’m delighted to say that last year was another ‘best’ for the charity in terms of the income we generated. The fully audited accounts will be published shortly, but everyone should be pleased with a very good year in difficult times. We spent nearly £500,000 on medical research, and as you’ll read later in this issue, we have been able to agree a similar
Thank you to everyone for your continued support of our work, and enjoy your magazine.
David Head, Chief Executive Taking Part in the Census? Many of us will want to take part in the Census on 27th March this year. If you are not sure of the procedure, there is lots of helpful information on the official site http://2011.census.gov.uk - and an accessibility area too. You can find various ways of completing the questionnaire and what to do if you would like some help. There is also a helpline. In England call 0300 0201101; Wales 0300 0201130; and Scotland, 0131 3340380. 3
r es e ar c h r e s ea rc h r es e ar c h r es e arch Charles Bonnet Syndrome Jane Canelle The article below from one of our members describes a little known and little understood syndrome which can affect those with severe sight loss. Hopefully, knowledge will soon grow as several UK research groups are currently investigating its cause and potential treatments.
ill. There are an estimated 100,000 people in the UK with CBS caused by macular disease. If we include people with CBS caused by retinitis pigmentosa, glaucoma and diabetes, the number of sufferers will be far larger. Yet even now, relatively little is known about the syndrome, even in the medical world. Recently however, the RNIB and the Macular Disease Society (MDS) have helped raise awareness of the subject. Hopefully, as CBS becomes better known and understood, people will be able to express their experiences without fear of prejudice.
Many people, particularly the elderly, who have suffered severe sight loss may also experience Charles Bonnet Syndrome (CBS). CBS is manifested by hallucinations or visions that can be quite frightening and unpleasant but may also be attractive and amusing. The condition was first described in 1760 when Charles Bonnet wrote of the images seen by his nearly blind grandfather - birds, patterns, buildings - none of which were there. Towards the end of his life, Charles experienced similar 'visions', although not as a consequence of failing sight. Since then, very little has been heard about CBS because to admit to "seeing things" might risk being thought of as being mentally
The "visions" can be in black and white or technicolour, static or mobile, frightening or fun, but no 4
points about a metre apart on a wall in front of you and look from one point to the other when standing about a metre and a half away. Your eyes should be held open during the movements. If the hallucination continues, have a rest for a few seconds and try another 15-30 seconds of looking left and right. If the hallucinations have not diminished or stopped after 4 or 5 periods of looking left and right for 15-30 seconds, the treatment is unlikely to work and you can stop. It may be worth trying again on another occasion or for a different type of hallucination.
doubt very annoying. The most irritating seem to be complicated patterns such as netting, bricks or tiles, but they might be as bizarre as seeing little people in the dining room, a forest in the garden or a gargoyle sitting at the end of the bed. There are a few drugs that help some people but they do have side effects, and the best way to cope is to talk about the frustration and incomprehension that attend this syndrome. It is thought that because the brain is receiving fewer signals from the eyes it compensates by producing fantasy pictures or old images that it has stored. Once people understand what is happening and are assured they are not suffering from a mental illness they are better able to fight back. The advice is to challenge the visions, sit if you are standing, if the light is on turn it off, move your eyes around and tell the visions - very firmly- to go away. The RNIB are shortly to publish a specific eye movement exercise which they believe may be effective for sufferers with macular disease. When a hallucination starts, look from left to right about once every second for 15-30 seconds, without moving your head. As a guide to how far to move your eyes, imagine two
CBS can be very frustrating but at least the symptoms are silent and usually disappear after about eighteen months. When they start a medical check is advisable to make sure there is no other cause, but CBS sufferers are assured they are not suffering from a serious mental illness. Their problems are caused by poor sight and nothing else. My uncle developed CBS when his RP became particularly bad, and the brick walls and looming patterns frightened him. A forest appeared in his tiny garden but when he understood what was happening he enjoyed the trees and the little people in brightly coloured clothes who were waving 5
It occurs to me that the images seen by uncle were related to his move from a house with a huge, well-loved garden with many trees to one with a tiny patio. My brother was a journalist and a fanatical chess player, so his images may have been stored in the brain but could there be a psychological element as well - a sort of wish list of important elements in life which poor sight has destroyed?
to him - as he said it was better to have that scene to watch than see nothing at all. Recently my brother rang, for months he had had an enormous eye looking at him, then rows of type, and now chessboards that prevent him from using what little sight he still has. He feared he had a brain tumour or was going crazy. I mentioned CBS but he lives in northern Canada where none of the medics had heard of the syndrome. After some research and a lot of discussion, he understands what is happening and is coping much better and is reassured to know that the symptoms are usually temporary.
Hopefully, as the syndrome becomes better understood the bricks, the monsters and the little people will be made to go away.
Editor’s note: Thanks to Dr Dominic Ffytche (opposite), Clinical Senior Lecturer King’s College London and Honorary Consultant Psychiatrist for his comments on Jane’s article. He says “The explanation of your uncle’s and brother’s experiences in terms of their wishes is entirely plausible. In fact, wish fulfilment was the main account of hallucinations up until the 1960’s. The problem is that most people who see chessboards and gardens do not have specific links to these experiences that reflect a wish or desire.”
To propose contributions to the summer newsletter, send them to us by 10 May 2011 at info@brps.org.uk. Thank you and happy Easter in advance!
6
Research Grants Give a Kick-Start to 2011 Following successful fundraising in 2010, RP Fighting Blindness Trustees received grant applications totaling over £900,000 for consideration at their first meeting of 2011 on 2nd February. Following recommendations from our Medical Advisory Board (MAB), presented to the meeting by Prof Tony Moore, three of six grants were approved for funding, adding £455,000 to our grant commitment over the course of 2011, 2012 and 2013. In addition, one of the other three grants will be reconsidered by the MAB in the light of the Trustees’ discussions. The other two were declined on the MAB’s advice. Well known to RP Fighting Blindness, Prof Shomi Bhattacharya at the UCL Institute of Ophthalmology, London was granted £187,982 over three years for a new project “Characterization of spacemaker (SPAM), a protein encoded by the gene EYS (RP25) implicated in autosomal recessive RP”. Dr Stephanie Halford at the Nuffield Laboratory of Ophthalmology, University of Oxford, was granted £127,206 over two years for a gene hunting project “Identifying novel gene mutations in inherited retinal degeneration”, after a good peer review of the application. Dr Philip Reeves at the University of Essex was granted £154,084 over three years for a new project “Structural restoration of rhodopsin ADRP mutants: sub-cellular localization and co-factor interactions”. This is of particular interest because it is complementary to Prof Cheetham’s work at UCL funded by our 2009 Big Lottery Fund grant. Chief Executive David Head said, “It’s particularly pleasing that the board has agreed to fund work at three centres in this round of grants; Oxford in particular is of growing importance as a centre for RP research. I’m also really pleased that we did not have to decline any applications for funding on financial grounds, which reflects the excellent income we generated in 2010. I am confident too that we will be able to fund a similar sum later this year.” 7
Patient led Research Leads to Orphan Drug Designation from EMA very complex. Researchers at the Smurfit Institute of Genetics in TCD have been working for over 20 years to identify the genes and potential treatments for RP. This rare genetically inherited condition is caused by gene mutations which lead to the degeneration of photoreceptors at the back of the eye and eventual sight loss.
In February our sister charity in Dublin, Fighting Blindness Ireland, reported success in securing Orphan Drug Designation for adeno-associated viral (AAV) based therapy containing DNA encoding an RNAi targeting rhodopsin and a replacement rhodopsin gene for the treatment of rhodopsin-linked retinitis pigmentosa. This technique is currently being developed by Genable Technologies.
This therapy switches off both copies of the relevant gene, the normal and the altered copies. Simultaneously, a replacement rhodopsin gene is introduced which has been subtly altered so it cannot be suppressed. It encodes normal protein which allows the photorecept ors to work normally.
GenableTechnologies Ltd. is a company formed by Fighting Blindness (Ireland) researchers at Trinity College Dublin (TCD) to progress the development of gene therapies for retinitis pigmentosa (RP) and other retinal diseases. Fighting Blindness Ireland was a founding investor in the company. Avril Daly, CEO at FB Ireland, said, “This is a very important step towards a gene therapy product for RP. It is believed to be the first time orphan drug designation has been granted for a gene therapy in Ireland.�
Avril welcomed this development ‘Research into a gene therapy for rhodopsin-linked RP was one of the first projects funded by Fighting Blindness Ireland in the mid 1980s. It is hugely exciting to learn that this project has led to a potential gene therapy that in turn
At least 150 different alterations in rhodopsin-linked RP have been identified worldwide which makes developing a gene-based therapy 8
receive orphan drug status in Europe. This decision by the EMA will help raise awareness of retinitis pigmentosa as a serious disease and ultimately help more patients receive therapy".
has received an orphan drug designation; it is a great day for patient led research. The relationship between researchers and patients is vital, particularly in the area of rare diseases where some projects would not be funded without patient groups taking the initiative. Today we are witnessing the results of these relationships. We know this is only one step towards a therapy for a dominant form of RP, but it is a major step and gives real hope to those living with this degenerative disease not only in Ireland but internationally’.
Ms. Daly added “This development would not have been possible without the support and perseverance of the members and friends of Fighting Blindness and the determination and skill of the researchers at TCD over the past three decades. We will follow the progress of this therapy closely and look forward to bringing more good news to the patients affected by RP in the not too distant future.
Rare diseases are often referred to as orphan diseases and in the EU these conditions must affect fewer than five in 10,000 (one in 2,000) to be classified as rare. To incentivise biotechnology companies to develop therapies for conditions that affect small numbers of patients The Orphan Drugs Regulation was introduced by the EU in 2000.
Did You Know ‌ As well as this quarterly magazine, we produce an email bulletin at the beginning of each of the remaining 8 months of the year to keep you updated.
There is still a journey ahead. This potential therapy must go through the human clinical trials process before it can be administered as a treatment.
You can sign up to get the free bulletin on our website at http://tinyurl.com/rpmail
Professor Jane Farrar of Trinity College Dublin and Genable Technologies Limited commented "We are extremely pleased to 9
RP Awards 2011 Thanks to a very kind in-memoriam donation from Muriel George, you will recall we introduced and awarded the John George Memorial Award for Volunteering at our Members’ Conference last year. I’m pleased to say this was very successful, with Beryl Duggan (right) being given the inaugural award. We are continuing this in 2011 and introducing two other awards – the RP Fundraiser of the Year and the Lynda Cantor (Founders) Award for the Future of the Charity, which is intended to recognise the contribution of a member or volunteer under the age of 25. We are now seeking nominations for these awards which will be announced on 25th June. The award recipients will be decided by a small panel from the nominations made. The panel will include one of our staff, at least one member, and one of our Trustees. Please can we ask you to give some thought to making a nomination and do please pass this message on to all of your RP contacts. Nominations need to be made by email to david@brps.org.uk by 1st June. For all awards, these conditions apply: • Nominations can be made by any member, trustee, or staff member and must be for individuals. • Nominees must be aware that they have been nominated. • Shortlisted nominees will be notified two weeks before the conference. • The winner will be announced and presented at the conference on 25th June. Additionally, there are some criteria for each award as follows. • The John George Award for Volunteering will be made to the nominee who, in the view of the panel, has contributed most significantly to the charity in a voluntary role. 10
• RP Fundraiser of the Year will be awarded to the individual nominee who, in the view of the panel, has contributed most significantly to the charity in a fundraising role. • And the Lynda Cantor (Founder) Award for the Future of the Charity is aimed at those aged 25 or under on 25th June 2010. It will be made to the individual nominee who, in the view of the panel, is most significantly influencing or contributing to the future of the charity.
f undr ai s i ng s uc c e ss es f undra i si n g su c from our volunteers across the UK
British military and civilian personnel based at the United Kingdom’s Maritime Component Command (UKMCC) in Bahrain have raised over ₤1,100 for RP Fighting Blindness. Inspired by a presentation from Royal Navy Petty Officer Simon Garvey, whose son Tom, 13, suffers from RP, the UKMCC team got together for an East of Suez Burns’ Night Supper. The haggis was piped in by naval dentist, Surgeon Lieutenant Commander Brian Chittick (pictured receiving the cheque from Simon), followed by the traditional address to the “Great chieftain o' the puddin-race” by Squadron Leader Colin Gillan. Scottish fare produced by the UKMCC’s amateur chefs was followed by some good natured ‘horse racing’. This was no Grand National but instead involved wooden horses with human ‘jockeys’, dice, and not a little team rivalry. Over ₤1,100 was raised. A big thank you to Simon and all those who contributed to this great initiative!
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Charity Rugby Match for RP Fighting Blindness Dylan Thomas’
Pictured: Falcons (light blue), Dyfed Powys (green); the Thomases, referee Matthew & Assistants Emyr & Richard.
enthusiasm of the appreciative crowd who witnessed a cracking game of open and adventurous rugby.
Frankie Valli and the Four Seasons sang a song in the 70’s called, “Oh, what a night”. That is exactly what Wednesday, 26th January 2011 was – a combined leaving do for former Chief Inspector Gareth Cowley (Chair, Dyfed-Powys Police RFC) and a charity rugby match between the Force XV and Cardiff Falcons RFC, a police team from the capital.
The score-line is not important. What was important however was the fact that everyone enjoyed themselves and a handsome cheque for £1,000 for RP research was handed over at the end of the evening by Assistant Chief Constable Nick Ingram, to our own David Morgan, QPM. Tries were scored by Kev Melly, Ryan Llewellyn, Alun ‘Tank’ Davies, Darren Morgan and John McWilliams.
In contrast to the London Wasps against Harlequins LV Cup game last January, when the “home” fixture was played in the warmth of Abu Dhabi, we decided to play our fixture in the blustery conditions around Carmarthen Athletic RFC ground in Johnstown, Carmarthen. However, this did not perturb the
Karaoke on the night with Mike Maynard at the helm was enjoyed by all budding ‘X Factor’ contestants. 12
No. 15 14 13 12 11 10 9 8 7 6 5 4 3 2 1 Subs 16 17 18 19 20
Name Ryan Williams John McWiliams Allan Rees Ryan Llewellyn Matthew Davies Phil Saunders Dylan Davies Arwyn Jones Ian Roach Kevin Melly Gareth Phillips-Cpt Simon Lewis Rob Evans Emyr Thomas Alun Davies
Station HQ Finance
Andrew Davies Gareth Lloyd Lawrence Holcombe Andrew Williams Darren Morgan
Guest Guest Cardigan Ammanford Ammanford
Ammanford
Llanelli Brecon Carms ARV Newtown Carmarthen Cardigan ARV Llanelli Carms ARV Pembs ARV Llanelli Llanelli Carmarthen Aberystwyth
Club Amman United Ammanford Ammanford Carmarthen Quins Unattached Betws Llandybie Llansawel Ammanford Tumble Haverfordwest Cefneithin South Wales Police Unattached
Carmarthen-Quins/Whitland
Whitland Whitland Felinfoel Unattached Pontyberem
Special thanks to Mr Matthew Thomas, an up-and-coming referee with a bright future ahead of him. He was ably assisted by Emyr Thomas and Richard Thomas, both from the Welsh Rugby Union.
Thanks to the Dyfed-Powys Police Rugby Football Club, and all those who contributed, including the members of the recent Special Constable courses who helped to sell the raffle tickets.
_________________________________________________ Sharon's Christmas Box for Somerset Yeovil's Octagon Theatre lays on a charity bucket collection during the pantomime season every year, dividing the proceeds between the theatre youth fund and a chosen charity – usually a local one. Sharon
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Athersuch, whose daughters Chloe and Gemma have RP, works at the Octagon, and was able to get RP Fighting Blindness nominated this year. Our share of the collections was a fantastic ÂŁ1,700, and in addition we had publicity from the stage appeal for contributions, and an article in the programme.
Photo: Sharon and Branch Chairman Russell Parsons receive a cheque from theatre manager Adam Burgan, together with membersTom Graham and Brian Whatmore.
Thanks Sharon!
____________________________________________________________________________________________________
Running Events These running events are taking place in March and April and there is still scope to sponsor the team members or simply come along and cheer them on. To sponsor or donate to the teams, please contact michelle@brps.org.uk. TEAM RP took on the challenge of the Adidas Silverstone Half Marathon on Sunday 6th March 2011. Ian Canning; Sandra Cunningham; Mike Cunningham; Jennifer Kellow; Lauren Ludlow; Daniel McArthur; Maryam Modarres; Somayeh Modarres; Claire Stevens; Chris Cooper. The Virgin London Marathon Team RP 2011 is running in April – see you all at the Crowne Plaza Hotel, London St James for a well-earned shower, massage and bite to eat. Any supporters who would like Tshirts, please contact Michelle at the Buckingham office on michelle@brps.org.uk. All support is welcome on the day around the course, let me know where you will be. 14
Sonja Carey; Gemma Carter; Nina Chalmers; Danielle Gallagher; Robert McGuchan; Kieran Ivers; Matthew Kingsnorth; Meg Potter; Charlotte Reeves; Rebecca Sharples; David Thompson; Sheila Massingale; Andrew McArthur; David Ellis (Nike); Sean Pankhurst (Nike); Paul Tomlinson; Francis Donohoe (Nike); Niall Ivers; Paul Lawrence; Kirsty Weston; Martin Komen; Simon Kirbyshire; Kirsten Johnson. We wish all our runners the best of luck!
calendar dates calendar dates calendar d Singing Weekend for Visually Impaired People
The weekend is suitable for beginners and experienced singers, and sighted companions are welcome.
The 2011 Singing Weekend will take place at the Cliffden Hotel in Teignmouth, Devon, UK, from Thursday 28 July to Monday 1 August (four nights).
The cost is ÂŁ272, and this includes all meals except lunch. The Cliffden Hotel is at 20 Dawlish Road, Teignmouth, Devon, TQ14 8TE, telephone 01626 770052. When booking, please mention that you are on the Singing Weekend.
The first session will be at 10am on the Friday and the final session will end at 12 noon on the Monday. From Friday to Sunday we will sing from 10am to noon, and 4pm to 6pm, working on short acapella pieces in three voices. The Musical Director will be Christine Richman, who has many years experience working with choirs of visually impaired singers.
Further details can be obtained from Mick Marr, email mick.marr@btinternet.com, or telephone 0207 602 2475. 15
Members’ Conference (and Notification of the Charity’s AGM) Our annual Members’ Conference takes place on June 25 this year, at Friends House, Euston, London. Please mark this important event in your diary and please note an earlier reference to 15th June is incorrect, the event date is Saturday 25th June 2011. th
The full programme for the day will be available shortly online and will be published in our next magazine in early June, but will include a presentation from medical researchers, exciting news about some of our own new initiatives, the RP Awards, and an exhibition. During the day you will have the chance to meet other people who have been affected by RP as well as our trustees, staff, volunteers and medical researchers. The event is free of charge. The conference day includes a 45 minute session set aside for the formal AGM business of the charity, including the presentation of the Trustees’ Annual Report & Accounts. If you are a member please accept this as the notification of the AGM. The RP Awards and how to nominate recipients are described on an earlier page of this magazine.
branch news branch news branch news b from our volunteers across the UK Coventry Resources for the Blind on Tuesday 1st March and was followed by a fish and chip supper.
Coventry and District Branch Leigh Kelly By the time you are reading this we would have had our belated Christmas meal at The Queens Head in Bretford at which we expected 24 people. Our AGM was held at the usual place at the
We intend to have a "Ghost Walk" through the streets of Coventry, escorted by "Lady Godiva" and on 14th May, Rob Merry (Jean & Richard's son in law) is doing a 16
100 mile bike ride from Stoney Stanton to Skegness. At the moment 25 cyclists are taking part. If anyone would like to take part, or sponsor Rob, please contact him on 01455 238982 or at rob.merry@talktalk.net.
Hampshire
Steve Harris We were very pleased to be able to send a total of ÂŁ9,000 to the Research Fund during 2010, a little lower than our totals of recent years, but still impressive. We are very grateful to everyone who strived long and hard to help raise this amount.
On May 21st/22nd we have a collection at Morrison's at Binley. If you can help in anyway please contact leighkelly@talktalk.net.
Our next meeting takes place on Saturday 16 April, once again at the St Lawrence Parish Room, Colebrook Street, Winchester. We start with coffee from about 10.30, and we are looking forward to welcoming speakers Sue Drew, the charity’s Outreach Officer, and Professors Alison Hardcastle and Mike Cheetham from the Institute of Ophthalmology. Please be sure to join us for what promises to be a very enjoyable meeting.
Yorkshire David Stevens Our Branch AGM and Members Meeting will be held a little later than usual to avoid RAG weekend, Easter holidays and the various Bank Holidays. It will be on Saturday 16th May 2011 at the Sheffield Royal Society for the Blind, 5 Mappin Street, Sheffield S1 4DT. The formal AGM will start at 11am, then after lunch break the main meeting will begin at 1pm and finish by 4pm.
Maureen Nickless organized another of her spectacular cabaret evenings on 5th March in Newbury. Many thanks once again, Maureen, for all your efforts to arrange these very special events.
We have the pleasure of a medical speaker this year, Mr Martin McKibbin, to update us on research developments, genetic testing and his area of research. Members, family and friends are welcome. Please call Richard on 07766 203585 or 01709 700198 for more information.
We are very anxious to find some extra help to arrange street or store collections this year. If you think you might be able to help, or would like to know more about 17
anything else mentioned here, then please call 023 8047 6894, or check our website at www.brps.org.uk/Hampshire
collection are welcome. Just ring Hazel on 01202 744344. As yet, no social events have been planned for the summer period but who knows what might come along as spring unfolds. But please make a note in your diaries that we intend to hold an early Stride For Sight event on Sunday 18th September in Poole Park and surrounding coastline. This should make for an interesting scenic walk which will also definitely get us noticed.
Dorset Branch Toby Hart By the time you read this we hope that we will have had a great AGM day with our special guest speaker Professor John Marshall. Moving into April and hopefully a warm snow-free spring, we have a number of tin collections planned to raise money for the research fund. Firstly we are collecting at Sainsbury’s in Ferndown on Friday 1st and Saturday 2nd April. We follow up with a collection at Haskins Garden Centre (renowned for its restaurant as well as its tempting displays) on Saturday 7th and Sunday 8th May. The Haskins collection days have been offered to us by the store after a member of staff read the letter from our Chairman in the local paper over Christmas – so one thing has led to another!
Ed … Stride for Sight is our annual set of co-ordinated sponsored walks up and down the country. They take place during the last weekend of September and raise several thousand pounds each year. Many of our branches get involved, but we are always looking for new walks to include in the event. If you can arrange Stride for Sight in your town, please contact Michelle on 01280 821334.
Over in West Dorset our industrious duo, Graham and Janet Keen, have street collections planned for 27th and 30th July in Dorchester. As ever, willing volunteers to help with any
Walks take place on sea fronts, in parks, across the UKs major bridges, and more.
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Obituaries
Sadly we report the deaths of two long standing supporters and members
In Memory of Dennis Fuller Mary Guest MBE
Dennis Fuller died in February this year aged 86. Dennis and Joan, his wife, attended the meeting in April 1975 at the National Liberal Club when the decision was made to form the British Retinitis Pigmentosa Society.
In Memory of Nellie Sutton David Stevens On 3rd January this year we said goodbye to one of our long standing supporters, Nellie Sutton, the mother of Sheila Foster who has RP. Nellie worked tirelessly raising approximately £2,000 using her knitting and sewing skills making items to sell. She was renowned for her velvet dress style peg bags. All materials had to be of the very best quality and her goods were taken all over the world as presents.
Dennis was very familiar with the effects of RP. His wife Joan was registered blind, his profoundly deaf son Dudley had RP and daughter Kate was also developing RP and hearing loss. After work he spent many hours at night corresponding with research centres worldwide in the hope that there was a cure. During the first few months of the charity Dennis took on the role of chair and although he stood down from that role to pursue other interests, it was helpful to have his reserve of knowledge to draw on in those early days.
Nellie also spent many hours standing with a collecting tin. Her last effort was sitting in a Morrison’s store in Bradford last year at the age of 94. We have received donations of over £200 in lieu of flowers in her memory. Nellie will be greatly missed by all who knew her.
Sadly, Kate’s mother Joan and her brother Dudley are no longer here but on behalf of the members we send our thoughts and condolences to Kate (Cathy as I first knew her), and her family. 19
technology technology technology techn Margaret Walmsley describes a fantastic feature of her new TV. I recently bought a Luxor 16-822 TVB television for £100, and was pleasantly surprised by its audio description (AD). The TV is easy to set up in normal mode and only a little more challenging to set up with AD. The audio description is great, describing what is happening in visualonly scenes. All soaps and many other programmes have AD, although older films predated the addition of this extra feature. TV magazines indicate programmes with description using the letters “AD”. My TV was programmed by accessing the menu, indicated by the letter “M”, going into set up, and navigating through the configurations here that offer further accessibility. Among these you will find Audio Description. Happy watching and listening! Thanks Margaret! Ben Wilson also flagged up the following too on the subject of audio description, a problem you might experience if you are living outside the London area. I've just discovered the reason why I might not be receiving full access to audio description on the main channels on Sky TV (Sky+) from their accessibility website. It says, “The four regional channels only include the audio description function in their London region. Therefore, if you live outside London, please note that you will have to select the following channels: • BBC1 London, channel number 974 • BBC2 England, channel number 989 • ITV 1 London, channel number 993 • Channel 4 London, channel number 994.” __________________________________________________________ 20
Audio Description in Theatres And while we are on the subject, Gill Burrington writes about the opportunities to visit the theatre when a performance is audiodescribed, for a vastly enhanced theatre experience for VIPs. each production, plan theatre visits well ahead and ask when theatres are putting on a described performance. Get yourself on the mailing list too, and check theatre websites. London-area audio described performances are listed in a bulletin called Access London Theatre. For a large print, audio or Braille copy call 020 7557 6700.
Did you realize that theatres are required by law to make their productions accessible to us? We just have to ask. The best and most enjoyable service I have experienced is when theatres provide audio information, regular audio described performances, and, associated with these, audio notes which are sent out in advance. These usually give clear and interesting details of the scenery, the plot, the characters and the actors, and their costumes, so I can be familiar with it all and look forward to the performance even more. And adding to the pleasure is when a touch-tour is organized, so you can go on the stage, get a sense of the space, and sometimes even meet the cast and get to know their voices. It all makes for far greater enjoyment.
To find out about a range of arts related audio descriptions, such as for museums, galleries and heritage sites, and an interesting new project of architectural tours, consult the VocalEyes website at: http://www.vocaleyes.co.uk.
Whether you like comedy, tragedy, modern or classical drama, ballet, opera or musicals, you can find an audio described performance to suit you almost anywhere in the United Kingdom. Because there is usually only one audio described performance of 21
Editor’s note – Here are two fantastic performances coming up at theatres. Many other theatres offer regular “accessible” performances. Shakespeare’s All’s Well That Ends Well at The Globe, London includes audio description on Sunday 12th June and features Janie Dee as the Countess of Roussillion. Call 020 7902 1409 or visit www.shakespearsglobe.com 28th March – 9th April. Coming to Aylesbury Waterside Theatre, Calendar Girls has become the most successful play ever to tour the United Kingdom and has taken more at the box office than the original film with ticket sales in excess of £21 million. Visit http://www.ambassadortickets.com/Aylesbury or call the Box Office on 0844 8717607 for details of audio described performances.
Spring Puzzle for the competition is 31st To win our mystery spring prize, simply tell us which two letters March 2011. Send the form or numbers should come next below to Spring Puzzle, RP in each of these five series. The Fighting Blindness, PO Box first correct answer out of the 350, MK18 1GZ, or email your hat wins, and the closing date answers to info@brps.org.uk ................................................................................................................ Name ___________Tel no________________ Postcode _____________ O,
T,
T,
1,
2,
3,
M,
A,
KG, 0,
5,
M,
KW, 3,
F,
8,
J,
F, 8,
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______, ______.
13,
21,
______, ______.
J,
A,
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QV,
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KG,
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______, ______.
15,
24,
35,
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______, ______. 22
RAG Weekend 2011 Readers are reminded that this year the Retinal Awareness Group (RAG) Weekend runs in Blackpool from 1st - 3rd April. This three day event encompasses a wide range of speakers, activities, speakers and social sessions for RP people of all ages and their families. This is a great chance to get involved with our work, meet others with RP, and enjoy a few days away by the sea. We will be hearing from our budding “Young RP” group as part of the meeting and indeed the group have arranged several extra activities during the event for younger people including a visit to the Blackpool Adrenaline Zone. The keynote medical speaker this year is Professor Robin Ali from the Institute of Ophthalmology who will be updating RAG participants on UK gene therapy and stem cell work, as well as answering more general questions from the audience about RP research. Professor Ali is eminent in the field of retinal research and we are privileged to have him as our guest. RAG is becoming an increasingly important event in the RP calendar. Details of the programme and how to take part are linked from our website homepage at www.brps.org.uk or you can contact Carole Holmes by telephone on 01253 404194, or Beryl Duggan on 01244 680463. Users of our website (www.brps.org.uk) may have noticed that the content of the Members’ Area has disappeared. In fact these pages have now been moved to the Resources section and made generally available. The section includes our research and financial reports. 23
Iceland Trek 2011 At the time of taking this magazine to print, we are looking for two more adventurous people – sighted or VI – to join our trek in Iceland in July. You will need to be reasonably fit and be prepared to fundraise the sponsorship money required, but don’t worry, you will have until the end of the year to raise the funds and we will be with you every step of the way – literally in the case of our Chief Executive David Head and his daughter Hollianne who are both taking part and raising the full amount. During this exciting expedition we will also be joined for some of the hike by members of the Icelandic RP Society, giving a unique opportunity to learn about this dramatic country from its own people, people with a good understanding of the effects of retinitis pigmentosa. Kristinn Halldór Einarsson of the group knows the terrain; “This is a fantastic trekking route”, he said, “some beautiful places and serious hiking.” An information day has been arranged on Saturday 9th April in London for those already taking part and those who are seriously considering joining the adventure. Spaces are limited at this meeting but if you would like to learn more about trekking to raise money for RP please contact Michelle on 01280 821334 or michelle@brps.org.uk to secure a place.
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*** NEW EVENT *** The ING New York City Marathon 6th November 2011 The first New York City Marathon, in 1970, was four-plus laps of Central Park. In 1976, in celebration of the U.S. bicentennial, the marathon was moved to the streets of New York's five boroughs: Staten Island, Brooklyn, Queens, the Bronx, and Manhattan. The course united dozens of culturally and ethnically diverse neighbourhoods, crossed five bridges, and finished at Tavern on the Green in world-famous Central Park. The course continues to challenge thousands of athletes every year and has become a model for big-city marathon courses around the world. Like its counterpart in London, the New York Marathon attracts participants ranging from elite athletes to charity fun-runners. Visually impaired runners can normally be assured of a place for guide runners too. We now have a really exciting chance to send a small team from RP Fighting Blindness to take part in this years’ event in return for raising sponsorship - both to cover the costs and of course make a contribution to our work. Could you run this race? Could you raise £10k? Would you like to be part of our first International TEAM RP? If you answered yes to any of the above and may be interested in taking part in this significant personal and fundraising challenge we would love to hear from you. Call for information without any obligation - contact Michelle on 01280 821334 or michelle@brps.org.uk. 25
Stars In The Community Organising your own fundraising event for RP Fighting Blindness.
Make a difference in 2011, and organise your own fundraising event in aid of RP Fighting Blindness. Get together with friends, family or work colleagues and have lots of fun doing the things you enjoy, knowing that every penny you raise will help support the continued work we are doing to find a cure. It’s really easy to organise your own event – We can provide you with a comprehensive fundraising pack to help put your ideas into action. From coffee mornings and pub quizzes to golf days and glitzy balls – there are so many ways you can raise funds to help us. You can fundraise at home, at work, school, at university, or with your local group or club. How to get started Simply think of an idea and go for it. We can provide fundraising materials, t-shirts and so on, and advice to get you started. To request a pack please contact Michelle at michelle@brps.org.uk to let us know what you are doing and we will send you our Stars In The Community Fundraising Pack.
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Stride (Round the Wight) for Sight Colin McArthur
As part of the Isle of Wight walking festival, Colin describes the planned walk for RP Fighting Blindness - right around the coastline of the Isle of Wight! We are going to attempt this as part of a week’s holiday, so we will set off on a short walk from Whitecliff Bay to Seaview on Saturday 7th May to get us in the mood and finish with a reception. From Sunday 8th - Friday 13th May we will be walking 8-12 miles daily, and hope to arrange a function at Whitecliff Bay to thank all the participants and helpers. We are very lucky to have David Yates, who has written the book “Beaches Bars and Blisters of the Isle of Wight” to lead this walk. If you would like a copy of his book to see what you are letting yourself in for it’s on sale at major book retailers, or contact us. Of course, David did this in 3 days but we will be making it a little more leisurely and pleasurable! If you feel the walk is too long, it will be possible to attempt it as a relay, or even just do 1 or 2 stages. We are asking for everyone taking part to raise sponsorship and we have arranged special prices for anyone wishing to hire a caravan or chalet at Whitecliff Bay. If you want to stay there, you can raise extra sponsorship to cover the cost. Ask for details. We are looking to arrange travel to and from Whitecliff Bay Holiday Park. If you are not staying there, you could leave your car there (with prior consent) and be ferried to the start and finish each day. We hope to make this a major fundraising event each year and would love you to join us. For further information, the itinerary, kit list, sponsor and forms call Colin on 01983 406661. Please let us have your expressions of interest ASAP!! Thank you for your continued support! 27
Waitrose Charity Scheme
Events April 1-3 RP RAG Weekend, Blackpool (see earlier article)
Ben Parker, Waitrose (left) with Stephen Jones (Trustee)
April 17 Virgin London Marathon (19 Gold Bond Places!) May 7-14 Isle of Wight Walk (see earlier article!)
The Waitrose store in Newbury, Berkshire, recently presented a cheque to RP Fighting Blindness for £460 as one of the beneficiaries of its charity scheme. Every store chooses three charities to support each month. £1,000 is split between these according to customer votes using a token system.
May 21 ‘Tour De Grouse’ Cycling, Scotland June 25 RP Fighting Blindness AGM & Conference (see earlier article)
Anyone can apply to their local Waitrose store for RP Fighting Blindness to be selected as a chosen charity. All you need to do is to fill in a simple form, which you can get from any branch of the supermarket, and hand it in at their customer service desk. As long as you show a local connection in your application (i.e. that you or someone else living locally is affected by RP) then the charity will be considered.
July 10 Asics British 10k London Run. www.runtofightblindness.org.uk July 16-23 Trek Iceland 2011 2 places left. www.trektofightblindness.org.uk July 17 Music for Sight. British Police Symphony Orchestra, Birmingham September 10 Jump 4 Sight – Tandem Skydive at Hinton Airfield
It really is that simple. However, if you wanted to apply, but felt you needed more information prior to doing so, please contact Julie on 01280 821334 or email Julie@brps.org.uk 28