The British Retinitis Pigmentosa Society
Summer Newsletter 2010: Issue 135
Inside! ● Reminder: Members’ Conference and AGM 2010 ● Usher Syndrome: Science and Experience ● What is Choroideremia? ● Fundraising news: £125,000 from London Marathon Team RP ● Expanding the Board of Trustees ● Is your TV prepared for digital switchover? ● Branch and fundraising news, crosswords, events and lots more! 1 Keep helping! Propose Membership to Friends & Family! RP Fighting Blindness is Registered Charity 271729
Contents Letter from the Chief Executive ________________ 03 Members’ Conference & AGM 2010 ____________ 04 Expanding the Board of Trustees ________________ 06 Usher Syndrome ___________________________ 07 Me and My Usher ___________________________ 10 Choroideremia _______________________________ 12 Calendar Dates ______________________________ 13 Switching to Digital TV _______________________ 16 Fundraising __________________________________ 18 Branch News _______________________________ 24 In Memory _______________________________ 27 Goods and Services ___________________________ 29 Crossword Puzzle No. 9 (Summer 2010) ___ Back Page Answer to Crossword Puzzle No. 8 (Spring 2010)
P P P P P
U U U U U
N N N N N
C C C C C
H H H H H
This unusual crossword was not what it seemed, we hope you didn’t take things too literally! Our winner was Gill Kemp, from Milton Keynes, Buckinghamshire. Gill won’t be picking up her prize though, since she prefers that the money should “go back into the kitty”. Thanks Gill!
Useful number and email address: our Outreach Officer Sue Drew is on 01280 821334 or sue@brps.org.uk. To propose contributions to the summer newsletter, send them to us by 10 August at: info@brps.org.uk. Thanks!
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Letter from the Chief Executive David Head MBA Dear Members for the Derngate Theatre in Northampton.
Welcome to your 2010 Summer magazine.
Once again your magazine includes news from several of our branches around the country. Those of you who get involved with local branches and the committees that run them will be aware we are looking to improve the support we give. As part of this, we are going to group our branches into three areas across Britain and are seeking three volunteers to help us strengthen links with the branches in each group. If you have time to give and are mobile, please get in touch with me directly to learn more.
The main item is the annual Members’ Conference and AGM, which returns to London Euston on 19th June. Later in the magazine, you will find the programme and other details. Please join us for this important event if you can. It is your opportunity to meet the staff, trustees, researchers and each other and hear from several excellent speakers. As ever we have news of fundraising events and activities. I have to highlight our Virgin London Marathon Team, 15 runners who all completed the course and raised sponsorship of over £125,000, a stunning result. Congratulations to them all.
As for research, you may like to know that the 2010 omnibus of our formal reports from our research teams has been published. This is available in the members’ section of our website www.brps.org.uk or by requesting a printed copy from the office. The online version is compatible with screenreaders.
Sadly I have to report that Sally Smith, one of the fundraisers here in Buckingham, is leaving us in June. We will be recruiting soon (there will be an announcement in the Autumn issue). I am sure you all join me in wishing Sally great success in her new role working
It just remains for me to thank you all again for supporting our work. Enjoy the magazine and I hope to see you on 19th June!
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Don’t forget our Members’ Conference and AGM is on Saturday 19th June 2010 in London Our conference coordinator, Alan Foster, reports on latest event plans Once again, we have a great programme and some excellent medical speakers lined up for the Members’ Conference this year. Please mark the date in your diary if you haven’t already done so. We would love to welcome record numbers of members! Venue & Location Friends House is in Euston Road, London, right opposite Euston Station and easily accessible. The House is the home of the Religious Society of Friends (Quakers). We have the use of the Large Hall throughout the day and large side rooms for the morning exhibition which this year includes more participants than ever. The House is a large building, but we’ll do our best to signpost our rooms and activities. There is a very attractive internal courtyard and garden area for refreshments and breaks during the day. Friends House is located on the South side of Euston Road directly opposite Euston Station and 5 minutes from Euston Square tube station. Several bus routes (10, 18, 30, 73 and 205) pass the door. Metered parking is possible in the area but is very limited, and disabled facilities are also limited. You can call 020 7278 4444 for more details. An NCP car park is close by, underneath the Station. Programme The programme is reproduced in summary below and is also available online in more detail at www.brps.org.uk. The exhibition is open all morning and some of our exhibitors will also present informally in the main hall. Mark Pampel has kindly agreed to play the piano during the morning and we invite you to make a donation in appreciation.
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10:00 Event opens, exhibition area open 11:45 Lunch 12:35 Conference Welcome David Head, Chief Executive 12:45 Plenary Session 1 Chair: Sir Alan Rudge The RP Fighting Blindness AGM 13:35 Plenary Session 2 Speaker: Lynda Cantor The John George Award for Volunteering 14:00 Break During this break the annual National Raffle will be drawn 14:35 Plenary Session 3 ● Mr Graham Drew - RP: A Young Person’s Perspective ● Mr Ken Reid - The UK Vision Strategy: An RP Member’s View 15:30 Plenary Session 4 Chair: Prof John Marshall ● Medical research session including Question & Answers ● Panellists include Moorfields consultant Mr James Bainbridge and researcher Professor Michael Cheetham 16:55 Chairman’s Closing Remarks 17:00 Event closes
The afternoon will start with the AGM with time set aside for questions and answers about the Trustees’ plans for the organisation. The Trustees will also present the formal report and accounts. This will be followed by the inaugural John George Award for Volunteering, where we will announce the first winner of what will become an annual recognition of our volunteers’ activities.
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After the break we will hear presentations from Graham Drew on “RP: A Young Person’s Perspective” and Ken Reid on “The UK Vision Strategy: An RP Member’s View”, both of whom will also answer questions. We will then move on to the medical research session chaired by Professor John Marshall. Professor Robin Ali’s work on Gene Therapy and stem cells is important to us and we are privileged to have one of his team, Mr James Bainbridge, as one of our panellists. James will be joined by Professor Mike Cheetham who is leading our lottery funded project on Rhodopsin RP. Other panellists will be announced shortly. Catering Tea, coffee and cold drinks will be available throughout the morning and at the mid afternoon break. For lunch, the Friends House has an attractive cafeteria and, for those who want to stretch their legs, there are pubs, restaurants and sandwich bars in the area. If you bring lunch, you can find a spot in the internal courtyard or garden area, but please note that alcohol is not allowed anywhere on the premises. Finally, please let us know if you intend to join us by emailing michelle@brps.org.uk or calling the office on 01280 821334 as this will help us plan for the correct numbers. __________________________________________________________
Expanding the Board of Trustees
David Head outlines our intention to expand the Board of Trustees. Over the course of the next year or so, as we press ahead with our five year plan for the charity, we need to expand the Board of Trustees to ensure that we have the appropriate skills and knowledge to direct our activities and finances as effectively as possible.
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Trustees of a charity hold an important and responsible position; they are responsible by charity law for ensuring that their organisation is well managed and that funds are used by the Trust appropriately and accountably. More information about these responsibilities is available from the Charity Commission at http://tinyurl.com/charcom The current board believes that there should always be a strong representation amongst the trustees from people with RP and from their families. If you have skills and experience in any of charity law, fundraising, PR or HR and are interested in learning more about how you could contribute to the development of RP Fighting Blindness, we would like to hear from you. Trustees make a commitment to attending and contributing actively to four or so Trustee meetings each year and to our annual conference. They are also expected to support various events. Above all they must contribute meaningfully to the development and direction of the organisation and must accept collective responsibility for its future. To learn more you can email david@brps.org.uk. __________________________________________________________ .
type 2 (USH2) are the most common types, accounting for about 95% of affected people in the UK.
Usher Syndrome Usher syndrome is RP accompanied by hearing loss. Hearing loss is often present from birth and varies in severity but can be profound. Usher syndrome is the commonest cause of people having both hearing and visual loss, and people with Usher syndrome face great challenges with both spoken and visual communication.
People with USH1 are extremely deaf from birth and may also have severe balance problems. Most use sign language as their primary means of communication. Recently, however, children with USH1 are benefiting from cochlear implants, thereby allowing them to develop speech. Most children with USH1 usually begin to develop RP related vision problems by the time they are 10 years old.
There are three types of Usher syndrome. Usher syndrome type 1 (USH1) and Usher syndrome
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People with USH2 are born with moderate to severe hearing impairment and normal balance. Although the severity of hearing impairment varies, most can benefit from hearing aids. These children most commonly use speech to communicate. The visual problems related to RP tend to progress more slowly than in USH1 and also tend to begin later, usually in late teenage years, but perhaps not even until 30s or 40s.
RP Fighting Blindness has recently funded work in Holland researching Usher Syndrome. The project entitled “Identification of the Pathogenic Mechanisms in Usher Syndrome: New Handles for Therapy And Diagnostics”- was led by Dr Kremer at Nijmegen Medical Centre. Dr Kremer’s report has recently been published as part of our annual omnibus of research reports, and in it she writes:
People born with USH3 have normal hearing and variable balance problems. Hearing worsens over time and may progress to profound hearing loss. However, the rate at which hearing and sight are lost can vary between affected individuals, even within the same family. Children develop noticeable hearing problems by their teenage years and usually become deaf by mid- to late adulthood. Vision problems usually begin during teenage years.
“... defects in the USH2A gene are the most frequent cause of Usher syndrome and also an important cause of RP without other symptoms. Not much is known about the function of this gene. The USH2A gene contains the code for a long and a short USH2A protein variant. The short variant leaves the cells after synthesis. The long variant stays with one end inside the cell and the characteristics of that part of the protein suggest that other proteins attach to it and that the protein might pass information from the outside to the inside of the cell.
Usher syndrome is a recessively inherited condition. There has been good progress in finding the genes that are altered and subsequently cause Usher syndrome; 9 genes have been identified, with more remaining to be found.
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“in this project we want to learn why the long USH2A protein is so important in the retina and what happens when this protein does not function properly because of a defect in the gene. Shortly before the present project started, we found that the long USH2A protein and the proteins encoded by other Usher genes bind to each other and function in a dynamic protein complex. Most members of this complex are present in the synapses and the region of the connecting cilium in photoreceptor cells. The connecting cilium is a microtubule-based structure in photoreceptor cells that connects the inner segment to the outer segment. Proteins needed for signal transduction and/or outer segment formation are actively transported through this connecting cilium ... the Usher protein complex is thought to play an important role in outer segment formation or maintenance. As a result, Usher syndrome can be regarded as a (retinal) ciliary disease, or ciliopathy.
common protein complex with proteins involved in different retina disorders implicates that the mechanisms underlying these disorders might significantly overlap. As a consequence, development of a therapeutic strategy for Usher syndrome in the future might also be applicable to other retinal disorders. Our latest results show that another Usher protein associates with a protein that is involved in the regulation of calcium ions in the region of the connecting cilium. This points to a function of the Usher protein complex in the regulation of transport and/or the renewal of the photoreceptor outer segments.�
Source: RP Fighting Blindness Research Reports 2009-2010, available to members at www.brps.org.uk RP Fighting Blindness is planning a unique and exclusive expedition to raise funds for medical research projects like this one, following the 1982 route of the British Army across the Falklands Islands. If you are interested in this stunning challenge call David on 01280 821334. Full details in the Autumn edition.
“We identified two interesting proteins (both) involved in other retinal ciliopathies: lebercilin, involved in Leber congenital amaurosis, and MKKS/BBS6, involved in McKusick-Kaufmann syndrome and Bardet-Biedl syndrome. The identification of a
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Me and My Usher Tricia Waterfield describes the consequences of Usher Syndrome for her and the things that helped her retain her positive and proactive approach to life, in spite of dual sensory impairment. Here is a short diary of the journey she took and her feelings at each stage. I was born deaf in 1958 and acquired RP in 1983 resulting from having Usher Syndrome type 2 (dual-sensory impairment). I attended Needwood School, Burton-on-Trent, with one of my three brothers Jamie. I remember having a conversation with my exsergeant teacher, who said he would rather be blind than deaf because you cannot hear the birds singing, and I replied, “Oh, no, I would rather be deaf because I could wear a hearing aid and I like to see colours and shapes of things.” I worked in a printing company as a typesetter and regularly visited my optician for 2-yearly check-ups due to being short-sighted and focusing closely on the screen full-time. My optician detected the problem and wouldn’t expand on it, but referred me to the hospital to carry out a few tests. Eventually I was told I had Usher (I was not told RP or Usher 1, 2 or 3) and not to bother coming back again because I would go blind and there was nothing that my optician could do. The consultant suggested that nobody could see in the dark, and laughed, and my self-esteem plummeted with no post-diagnosis counselling support. My brain was overactive, mapping out the future – job, family and coping skills. Michael and I had to seek genetic counselling support before raising a
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family. They were extremely helpful and I happily became a mother to my healthy daughter, Katie. I concentrated on looking after my loving family, beautiful home, garden and adorable pets. I am not the type of person to wallow in self-pity. I knew I had to be mentally strong and live my life to the full, blocking out my RP. Unfortunately as time went by, that was proving difficult. I was clumsy. I thought, “enough is enough. I have to talk to someone who knows about RP”, and my brother Jamie - who also has RP - referred me to SENSE. There I spoke to Mary Guest who was very reassuring, explaining how to make things easier– for instance by buying coloured items and avoiding monotone to reduce glare. And, of course, she explained, you won’t go blind completely. I was employed by SENSE as an employment project worker in the Staffordshire region. The main aim was to break down barriers to make information and buildings accessible and give employment support for people with sensory impairments. In 2008, I decided to take up the fundraising challenge to the Sahara Desert and sent out information about my Usher Syndrome with the appeal. It was great to raise awareness about RP and deafness as they are hidden and unique – the support at home and abroad was overwhelming. I know it is really hard being dualsensory impaired. It is “double the trouble” when I have an incident. The recent one was cooking eggs and chips for tea. I put egg into the potato chipper and ... ugh!! Modern technology is a gem for communicating. If you have Usher please feel free to send me a text on 07749 518 071. I would love to hear your views on living with Usher. Tricia Waterfield is a member of RP Fighting Blindness
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Choroideremia Choroideremia is a very rare, X-chromosome linked condition, which affects the choroidal layer of the eye initially, and ultimately the retina too. It leads to blindness and there is currently no cure. Avril Moncaster provides a little background, with a bit of hope on the horizon. There is some very positive and encouraging research into this condition taking place in London and Oxford. It is being led by Professor Miguel Sebra at University College London and Professor Robert MacLaren (pictured left) at Oxford University. They hope to conduct gene therapy trials on patients with choroideremia this year. Obviously this is a very exciting, welcome development, but it will be some years before the treatment is perfected. As ever, funding for research is vital. An amazing £130,000 has been raised over the last few years by one family - plus all their friends and associates. They are the Salisburys of East London. Their incentive is 9-year old Tommy Salisbury, who has choroideremia, which runs through the family. I am a carrier of this inherited condition, though I did not know this until my son was diagnosed. His two daughters are both carriers too. We are really thin on the ground! There are only 600 known cases of choroideremia in the UK. If you are one of these, you may be feeling isolated. Don’t be. Even if you don’t want to be involved in fundraising, do contact Dot Grindley, Tommy’s grandmother. Contacting someone else who has the condition, and who understands it, really helps. For more information contact either Tommy’s mother, Emma at emmas@metronet.co.uk, or Dot Grindley, his grandmother, at dotgrindley@btineternet.com.
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calendar dates calendar dates calendar d Just Not Cricket As We Know It!! Marylebone Cricket Club is providing ball-by-ball commentary for blind and visually-impaired fans during seven games at Lord's this summer. The Club has a team of volunteer commentators providing the service in-ground to blind and VIP visitors to Lord's and online at www.lords.org.
The matches for which commentary is being provided are: • • • • • • •
Friday 25th June, MCC Universities Challenge Final Saturday 26th June, Eton v Harrow Sunday 27th June, MCC v Pakistanis Twenty20 Tuesday 20th July, England Women v New Zealand Women Tuesday 27th July, Inter-Services Twenty20 Tournament Sunday 12th Sept, Village Cup Final Monday 13th Sept, MCC Schools v English Schools Association
Headsets and receivers can be obtained from any Lord's steward. In addition, during international and county matches at Lord's,
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commentary from the BBC is available to blind and visually-impaired fans through the headsets and receivers. This service from both MCC and BBC is totally free of charge. For questions or to notify Lord's of a large group visit, please contact Abi Carter at Abi.Carter@mcc.org.uk or call 020 7616 8677.
Continuous Through Summer: Come Barbecue With Us. Here is an idea for fundraising from the Isle of Wight, Linda and Colin McArthur, which we think could be transferable across the country. Here’s how it works. 1. Your host or hostess will invite you to a barbecue or dinner and will ask you to donate £5 per head to the charity. 2. After you have attended your barbecue/dinner you fill in a “marks out of 10 form” and return to your organiser. 3. During the barbecue/dinner you will be asked if you will host your own barbecue and invite other people at £5 per head, and your host and hostess who will attend free. 4. During your party you will ask your guests if they would host a barbecue/dinner and invite their friends at £5 per head, and yourselves free of charge. 5. At the end of the season the best party host and hostess will receive a prize. To hold a “Come Barbecue with Me”, please ask Linda or Colin on 01983 406661 or 07935 747332 for a pack with invitations and other details.
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●14th November Big Band Afternoon, Freshwater Bay House. Music by the New Forest Big Band Sound. To book the hotel phone 01983 752071.
Isle of Wight Happenings Colin and Linda McArthur The event above and those listed below are all planned to raise money for the I Love Sight Appeal of RP Fighting Blindness at Southampton University Hospital, where they are working on restoring sight using iris cells to replace stem cells. Please support these if you can. Thank you in advance. Contact us on 01983 406661 or 07935 747332 for details.
Would anyone like to join a walk around the perimeter of the Isle of Wight, next spring over 5 days or 2 weekends? Or do you want to take part in a crazy golf tournament? Expressions of interest to Linda and Colin on 01983 406661 or 07935 747332. Until 19th June, books of national prize draw tickets are available from Linda and Colin. £5 per book of 5 tickets and great prizes including holidays abroad. Sell some on our behalf to your friends, neighbours and workmates.
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● 4 July Launch of the I Love Sight Appeal, Priory Bay, 3-5pm. High tea to the sounds of Phoenix playing cool jazz in the marquee overlooking the Sea. £17.50 per head. Thanks to Class Conservatories & Wightlink for sponsoring this. ● 24th-27th September Whitecliff Weekend. Theme “The Electric 80’s” with ultimate Madness, Sweet Sensation and tributes to George Michael & Wham and Madonna. Splash for cash on Saturday and Stride for Sight on Sunday. Try Archery and the Water Walkerz. Book at Whitecliff on 01983 872671 or go to Whitecliff-bay.com.
RP Events Around the UK Sign Up Now! ●19 June AGM / Members’ Conference. National Raffle Draw. www.brps.org.uk ●11 July Run for us in the Asics British London 10,000m ●5 Sep Adidas Women’s www.womenschallenge.co.uk
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5k
●5 Sep The Great British Duck Race www.thegreatbritishduckrace.co.u k/o/rpfightingblindness
Mary Guest, long standing member and previously a Trustee at RP Fighting Blindness, received an MBE earlier this year – here are the photos!
●11-22 Sep Namibia Project Challenge www.trektofightblindness.org.uk ●25 & 26 Sep Stride 4 Sight www.brps.org.uk ●26 Sep Run To The Beat HalfMarathon www.brps.org.uk ●March 2011 Adidas HalfMarathon. For guaranteed Places. email michelle@brps.org.uk. ●April 2011 Virgin London Marathon For guaranteed Places. email michelle@brps.org.uk. ●July 2011 Iceland Trek – 30 Guaranteed Places. Email michelle@brps.org.uk.
Margaret Pickess, Mary, Sue Sturley
Switching to Digital TV Here Comes Digital TV! Anna Jones, RNIB, gives some information on how to prepare to receive Digital TV before the analogue signal is switched off gradually across the country between 2010 and 2013.
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The benefits of digital television include better sound and picture quality, and more radio and TV channels. Another benefit for viewers with sight problems is that audio description is available for many mainstream programmes. It’s inserted between programme dialogue and describes what’s happening onscreen. Everything from films to soaps, dramas, documentaries and comedy is described now. When and how? Digital switchover will take place gradually, one TV region at a time. The first is West Grampian (Scottish) in 2010 and the last, Channel Islands in 2013. There are three main methods of receiving digital TV. Digital Satellite (Sky) via a satellite dish. There are subscription packages, but if a viewer doesn’t want to pay then another option is to use Sky’s Freesat service instead (one off payment of around £150 for a set-top box, satellite dish and other installed equipment). Contact Sky on 0844 2410333 or http://www1.sky.com/accessibility/audiodescription.htm Digital Cable (Virgin Media) via underground cables. The service is offered on a subscription basis and various packages are available. Virgin Media provide the necessary installation of the equipment. For more information contact Virgin Media on 0800 052 2525 or visit their website at www.virginmedia.com Digital Terrestrial (Freeview) through your TV aerial. To convert your existing TV to digital via Freeview, just buy a cheap set-top box and connect it to your TV and aerial, or purchase a new Integrated Digital Television (IDTV). For details contact the RNIB on 020 7391 2398. One set-top box on the market delivers audio description - the Portset Accessible TV Receiver and Personal Video Recorder. Call Portset on 01489 893919 or www.portset.co.uk and to find out about their standalone device that delivers sound-only TV. Beyond this, you can buy a card (DigiTV) for your computer. It works very well with screen readers. It’s available from Nebula Electronics. Contact 01689 89 70 90, or see www.nebula-electronics.com. Assistance in Switching Households eligible for the government help scheme are as follows:
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- one person is registered blind or partially sighted - one person is 75 or over - one person with significant disability who is claiming attendance or disability living allowance The scheme will give people (free or for a small fee depending on circumstances) an accessible digital TV receiver and installation help. Contact Digital UK on 08456 50 50 50. For further information from RNIB, email peter.atkin@rnib.org.uk or call 01487 813172.
und raising fund raising fund raising fun from our volunteers across the UK
A Hundred Grand Day Out! RP Fighting Blindness' TEAM RP, 15 runners who tackled the famous Virgin London Marathon 2010, have produced two fantastic results for the charity, with all 15 runners finishing and a total of over ÂŁ125,000 being raised.
Every one of the 15 runners completed the race, a fantastic achievement in its own right. Our heroes and heroines all made very respectable times too, including an outstanding 2 hours 38 minutes by David Bradford. David is one of several members of the team who have a visual impairment as a result of retinitis pigmentosa (RP). The other amazing result was a stunning total of over ÂŁ125,000 in sponsorship. This money will fund our work trying to find a cure for RP and supporting people with the condition.
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David Head, Chief Executive at the charity said "I am truly taken aback by the result, and the spirit, from TEAM RP. What a fantastic amount raised and a great bunch of people too. We are so proud of their achievement and every one of them should take a personal pride in it too. Well done to everyone involved." Sir Alan Rudge, Chairman of the charity, and Trustee Lynda Cantor were present at the finish reception to greet the runners and thank them personally. However, with all due respect to the Chairman and Lynda, the most welcome sight for the runners seemed to be the team of sports masseurs provided by Milton Keynes College and a chance to have a shower and refreshments. It was all very well deserved. The individual runners' times are available on our TEAM RP Virgin London Marathon 2010 webpage here: http://www.brps.org.uk/index.php?tln=fundraising&pageid=294 Thanks to everyone who took part and supported including the guide runners who supported Colin and Ken and David Bradford's team mates Robbie James and Neil Gower. Following this success, RP Fighting Blindness is now working to secure places in the 2011 event. If you would like to join TEAM RP for the 2011 London Marathon please contact Michelle on 01280 821334. We will provide every support including fundraising materials and a welcome reception (including shower and massage!) on the day. Limited numbers of places are available so please register your interest quickly.
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The photo shows Siobhan Mellon celebrating her 21st birthday on 20th February – skydiving from 10,000 feet!! She collected £470 from friends and family for the charity from this feat they are all very proud. Siobhan’s Mum is the only person in the family diagnosed with RP. Thanks Siobhan!
Running in Tune to the Sony Ericsson Beat! Former students and staff member Helen Bliss, (Cambridgeshire), David Rawlings (London), Ray Jukes (Birmingham) and Julie Thomas (Newport) raised money for us, the Royal National College for the Blind and Help the Heroes with this awesome 13.5 mile run!! Starting with light early morning jogs, they built up their fitness over three months. David Rawlings said, “The conditions that day were ideal for running. The theme Run to the Beat was represented because bands played motivational music along the course in Woolwich, South London”. Julie Thomas said “We had a wonderful view of the beautiful sights of London as we headed towards the 10 mile mark into the Greenwich Park and the Royal Observatory”. Ray Jukes added, “As the O2 buildings structures came into view and we saw the home straight through the Millennium Park, the cheering crowds spurred us on.” As Ray suffers from RP, he decided to run alongside Julie so as to help point out any obstacles in the way!! The day was a huge success and they raised a fantastic £268 for RP.
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Ceilidh for a Cure A civic reception was held in Dundee to mark the achievement of the Everest trekkers from Scotland and the efforts of the Cassidy and Findlay families towards the fundraising total. A cheque for over £3,000 was presented by the Lord Provost, John Letford, to David Head, our CEO. This was raised by Ceilidh for a Cure, held at The Friary in Dundee and other events. Thanks to Mary Findlay for great efforts organizing the ceilidh and reception.
Cumbrian Coast Canoe Challenge A daring team are planning a canoe trip down the entire Cumbrian coast. Our member Jonathan Ripley (22), from Lancashire, describes the plans to raise around £10,000 for the charity. He hopes the challenge will create awareness and inspire others. Our aim is to complete a unique, challenging (and environmentally friendly!) 100-mile journey in 2 x 18 foot Canadian “open boat” canoes. It starts at Port Carlisle (the furthest extremity of Cumbria) and carries on down the entire Cumbrian Coast, across Morecambe Bay and onto the entrance to the River Wyre at Fleetwood, Lancashire.
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We see the trip as an expression of our interest in conservation of the natural environment. We also want to use it as a vehicle to raise as much awareness and sponsorship for RP Fighting Blindness as we can. The boats are being provided and sponsored by Keswick Canoe Company, whose owner and crew member Paul Weller organises and runs guided trips and canoe wilderness experiences across Northern Europe. He’s a bit like Ray Mears, designing and building canoes but also with many successful canoeing and mountaineering adventures under his belt. Greg Wilson and I came up with the idea. We’ll be coordinating the project. Our third crew member is Tim Whitehead. Tim and Paul are working on the design and build of the boats and logistics. Together, we’ll draw on significant outdoor and professional skills and enthusiasm. We plan to sail two men to a boat and carry all necessary equipment and supplies for the 5-day expedition (weather and tide permitting). The dangers of Morecambe Bay and camping by night are just some of many things in store for us, but of course we will prudently have a shore support vehicle and other safety devices and tools available to us The coastguard is not the only one who will be informed of our route, since we’ll publish a dedicated website to keep all interested informed of our progress. We’re pleased to say that we already have a strong level of interest in the expedition from regional ITV and local press. Please visit our Just Giving page if you would like to support us: http://www.justgiving.com/CumbrianCoastCanoeChallenge. For details contact me at JonathanRipley@o2.co.uk, or Greg on 07971 027182.
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Auction of Promises By Toby Hart, Dorset Branch On Saturday 20 March I attended a fabulous auction of promises organised by Amy and Helen Gould in Stallbridge village hall. Attendees bid for over 70 lots or promises. All items up for grabs were either donated by businesses or by local individuals. A ploughman’s lunch and busy bar kept the bids flowing. The diverse range of lots included Easter cakes, a jute bag of Dorset Cereals, free check-up for a cat, a day trip to the Red Bull factory and tickets for Countdown and Deal No Deal. Other unusual lots were half hour flights from a local airfield, 15 bales of hay and even a locally made arbour. However the real highlights were the promised dinner parties for eight. One fetched £320 and another £420. There must be some secret Master Chefs lurking in deepest Dorset at those prices! By the end of the evening the eager bidders had paid up an amazing £6,000 and this will be split equally between RP Fighting Blindness and the Dorset and Somerset Air Ambulance. This was a really fun event and the Dorset branch wish to thank Amy and Helen for their stupendous efforts to pull it together. Why not try one in your area – I am sure that Amy will happily give you some pointers. __________________________________________________________________
Boats, Planes and Now What. Trains? The ever-daring Colin McArthur, who has already flown a plane and navigated a ferry despite his visual impairment, is turning his hand to land-based transport of the glorious past, the steam train. This is the
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W24 “Calbourne” in Southern Railway olive green. Colin will be driving it at the IW Steam railway at Havenstreet on 11th August.
This challenge will last all day. Colin says, “I will not only drive the train, but collect and sell tickets, work the signals, be a guard, and work in the cafe. We are also getting half the admission money for the day and collecting for RP.” Colin and Linda McArthur are making heroic efforts once again to publicise this stunt with local and national media in the name of the charity. They will be asking for sponsors and setting up a Just Giving page. Contact either on 01983 406661 or the railway on 01983 882204. _________________________________________________________
branch news branch news branch news b from our volunteers across the UK YORKSHIRE (HULL) David Stevens We held our AGM on April 17th at the Royal Society for the Blind in Sheffield. 26 members attended. The accounts showed that we raised £6,611.00 in 2009, down on last year but reflecting the economic climate we are in. Still a very good result. The branch also returned the same officers into office for 2010.
We moved to Sheffield in the hope more members would come, with a slight improvement on last year. We took the decision to meet here next year and look forward to even more attending. Annette Bonner from the Guide Dogs gave us a very interesting talk. Details on our "Stride for Sight" in September will follow. Hull Branch has done three collections this year, at Asda, Morrison’s and Princes Quay. (For the latter thanks are due to
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Party at their home in Piddletrenthide. It is such a well organised event and everyone has such a wonderful afternoon so do try to come along. There will be stalls selling cakes, gifts, books, and plants, as well as a raffle and tombola, not to mention the wonderful cream tea to enjoy in the garden. Have a good summer and we look forward to meeting you at one of the events.
John Hoe, Eileen Atkinson and dog, my wife Elizabeth and John's wife). We raised £507 in total. Thank you to all those who helped to raise money in 2009 and let us hope 2010 is better. Anyone in the Hull area who can help me collect, please ring 856040.
DORSET Hazel Hart
HAMPSHIRE Steve Harris
Fundraising can seem hard work but it all seemed worthwhile when we had a little of the complex work of the research scientist explained to us by Professor Andrew Lotery. He spoke to us about his scientific research work for RP at our AGM in March. A further source of inspiration was Colin McArthur with his relentless fundraising over the years. We all enjoyed meeting him and his wife, Linda, with their story of fundraising for RP.
We held this year’s main meeting on Saturday 17th April in Winchester, and it was good to meet friends old and new. During the morning session we were entertained by two speakers from our local Adult Services Sensory Unit, and they included demonstrations of some new items of equipment. Unfortunately our two very eminent medical research speakers for the afternoon had to cancel at the last minute due to a bereavement, but we were fortunate that Ted Dwyer and Stephen Jones kindly agreed to step in to the breach. They gave us a lively and interesting session. Our prize draw at the end of the meeting raised about £540. We are very hopeful that
On the horizon are several street and supermarket collections. Please, please try to help out, even if just for an hour? Contact Toby on 01202 744344 for east Dorset, and Graham on 01300 348851 for west. Please also note Saturday 11th July when Janet and Graham Keen will be hosting a Garden
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our medical research speakers will join us next year, so watch this space.
We hope that Ruth will give us a talk about her experience at one of our next branch meetings.
Our 2010 street collections are planned for Bitterne on 5th June, in Winchester on 10th July, and at Sainsbury’s (Badger Farm) near Winchester on 7th August. Please get in touch if you can help us with these.
Some dates for your diaries: 4th July Branch meeting, Ivy Bush Hotel, Carmarthen. 19th Sept Branch meeting, King Hotel, Pontardulais. 12th Dec Xmas Lunch, King Hotel, Pontardulais.
Maureen Nickless organized a very successful Cabaret Evening in Newbury on 10th April, raising over ÂŁ1,000 for the RP research fund - a wonderful result. Grateful thanks to Maureen for her efforts.
An Xmas Fair will be held on Friday November 26th at the YMCA Hall at Talog, Carmarthen. Anyone willing and able to lend a hand or provide items for sale would be very welcome.
We plan to hold another Stride for Sight on 25th September, so please note this date. Full details nearer the time.
We are all well aware of how difficult it can be for some of us to attend branch meetings, mainly due to the widely spread, rural nature of the area. All ideas for arranging new venues for 2011 are most welcome.
If you would like to get in touch, use 023 8047 6894, or email hampshirebranch@brps.org.uk
WALES (CYMRU) Marian Evans A great big thank you to Ruth Newman, who, despite her blisters, completed the London Marathon in just over four hours. Thanks also for your sponsorship and letters of support and encouragement.
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organised our first street collection, with Eunice going on to take part in 80 collections over the next 26 years.
In Memory
In 1981, we were sad to see them moving south where they joined the Hampshire Branch, our loss and their gain. There they enjoyed sailing on their boat. Eunice was game for most things including blind bowls and oil painting, and she was especially passionate about gardens. In 2005 we were delighted when both returned to the Midlands, Pershore, to be nearer to daughter Elaine, husband Mark and wonderful grandson Daniel. Eunice took part in the Pathfinder Group for local blind people, several U3A groups, and the “knit & natter” group.
Eunice Higgins 1938-2010 by Margaret Green
We received with great sadness news of the passing of Eunice Higgins in February, loyal RP Fighting Blindness member and dear friend for over thirty years, following her diagnosis of cancer. Eunice was the lovely wife of our acclaimed former news letter editor, sound technician and roving mike at AGMs, Selwyn Higgins. They met in 1956. Together, they enjoyed walking in the peak district and open spaces.
We were privileged to know Eunice. She touched the hearts and lives of all who knew her, showing great courage and fortitude with good humour, minimising her difficulties, maximising her abilities and always with her beautiful bright smile.
Living in Lichfield in 1977, they joined the then Midlands Branch of BRPS, where they were popular and supportive members, helping with fundraising and joining in the branch “soggy and sunny” camping holidays. They
Over a hundred people came to her Service of Thanksgiving at The Abbey Church of The Holy Cross. Our thoughts are with Selwyn and his family, who extend special thanks to all those
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who donated to RP Fighting Blindness (BRPS) in her memory, a total of £1,109.
member of the charity - more than 30 years. Many will know that it was her husband, Ken, who became a dynamic fundraising officer for the Midlands branch and later founded the Hereford branch. Ken also served on the Management Committee for a number of years and the charity benefitted hugely from the couple’s work. Our thoughts are with the family at this sad time.
Olga Prendergast: A Tribute by Annie Bateman Olga sadly died on 28 January 2010. She and husband Michael, who passed away 11 years ago, were active members of the London branch for years, fundraising tirelessly, speaking at branch meetings, and supporting members at meetings and in their spare time.
Edith Evelyn Winsper by Bev Hollingsworth It is with regret that we report that Mrs Edith Evelyn Winsper, mother of David Winsper and Val Vale, grandmother to Bev and great grandmother to Justin Hollingsworth passed away on 6th March. Edith was 93 years of age and has always supported the Midlands branch. She appeared for, and went to the launch of, the “Break the Chain” campaign and was filmed by Channel 4 in the patient information DVD. Our condolences go to Edith’s family, she will be sadly missed.
Olga and Michael gave selflessly out of the goodness of their hearts for they had no connection with RP, nor any family member suffering from it. They simply heard about the charity through their church. When Michael died Olga was bereft. I therefore felt it important to support her and continued to visit her regularly until she passed away. Thanks to Olga and Michael for their selfless giving.
Mrs Agnes Whetton by Roger Green
The family asked only for family flowers and donations to RP Fighting Blindness. Up to the end of May they had received a total of £627 for the medical research fund. Many thanks to everyone for their kind support.
It is with sadness that we announce the death of Agnes Whetton, who passed away earlier this year, following a short illness. Agnes was a longstanding
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goods & services goods & services Vision - Can Cook, Will Cook! Maxine Turkington explains the importance of cooking in her life and how she overcomes visual difficulties.
I enjoy food and cooking for myself, my husband Syd and friends. I have compiled a large print cookbook, with over 100 recipes chosen for their easy to prepare qualities. “Cooking for VIPs” is set in bold 18 point typeface. It provides healthy, affordable recipes, with cooking hints and practical tips in kitchen organisation and food preparation. Losing vision, whether partially or entirely, can be traumatic, particularly if you allow it to rule your life. Adopting my motto of “when your life changes, change your life!” applies to an entire new life regimen including cooking. Preparing wholesome and tasty meals builds selfconfidence, a valuable asset for other aspects of life too. My husband Syd and I seldom eat out because we both enjoy my cooking and we can have an affordable sumptuous feast at home. And inviting guests can help widen your social circle. I fervently believe in maintaining a positive attitude no matter what life hands us. My motto has steered me in the right direction and I hope I can inspire you and encourage you to try new projects too. Here are a few cookery tips I have found useful: • Buy the best kitchen and cooking utensils for your level of vision. • Learn how food should taste, then simply create your own recipes. • Use lots of herbs, fresh or dried, to permit using less salt flavouring. • Avoid “Celebrity Chef” recipes, often difficult for low-vision cooking. • Don’t fret about presentation – difficult to achieve with low vision.
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• Never be afraid to experiment. • Invite friends to dinner but try the dinner recipe on yourself first. “Cooking for VIPs” is available from Maxine@tips4vips.co.uk or 01223 246712. A donation is made to us for each book purchased.
News from Calibre Audio Library Calibre offers a free postal service of audio books. If you enjoy books you will know how important they can be. Calibre has more than 19,000 members all over the UK, and over 8,000 titles in the library, all recorded cover to cover. They offer a good selection of fiction and non-fiction and are adding new titles all the time. The service is free and there are no fines for late books and no charges for losses or damage. Calibre uses the Articles for the Blind freepost concession. Calibre’s books are available on MP3 format CDs, USB memory sticks and cassette. The disks and memory sticks have many advantages over cassettes. Most books will fit onto one disk or stick, the sound quality is clearer, and there should be fewer problems with breakages. The postal packets are easier to fit into letterboxes too! For details about Calibre’s service and the players which play its disks and sticks, see www.calibre.org.uk, phone 01296 432 339, or email enquiries@calibre.org.uk. There will be a stand at our conference in London on 19th June and a selection of players for you to try.
A Safer Hob For The Blind Toby Hart from Dorset gives his view on how to select a hob which you can feel safe using, and reviews one successful product. When installing our new kitchen, we wanted to have a means of cooking that I as a blind person could use. Gas hobs with their naked
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flames were definitely out. Ceramic or halogen hobs have a bright glow, (good for those with some sight) but there is still the risk of bad burns. Then we were introduced to the induction hob, which looks and feels like a glass topped halogen hob, and works by using magnets. The power to each ring is triggered by touch controls (don't despair just yet) which turn the magnets under the rings on. No heat is generated until the right type of saucepan is placed on the ring – before that you can even touch the ring with your fingertips! You use saucepans made of iron or induction friendly saucepans which have magnets or a conducting coil built into their base. Once on the ring, the contents of the saucepan heat up very rapidly - as fast as with gas if not faster - and the hob responds instantly when you turn down the power too. As soon as you remove a saucepan from the ring you can touch the hob if you want to clean with a damp cloth. The controls on our hob are touch buttons set into or just under the glass surface. The power to the hob is switched on using one control button. Each ring then has its own pair of "Up" and "Down" touch sensitive buttons which raises the power up or down in increments with each finger press. I have stuck one of those sticky raised dots (available from the RNIB) on the surface of the glass top just under the Power On/Off button and under each ring’s "Up" and "Down" button. WIN a mystery prize by entering our general knowledge crossword overleaf. Send your grid to: RP Members’ Crossword 9 P.O. Box 350
Buckingham MK18 1GZ Name: .............................. Tel: .................................. Postcode: ........................ Closing date: 1st July
To use our hob I place the pan on the ring using my fingertips to line up with the circular magnetic rings (I can feel them in the glass surface). I turn on the power button with one finger press, and put my ring to full on (level 9 on our hob – three finger presses). I can tell when the food is boiling by vibration or noise and steam, then repeat the process in reverse or leave it to simmer by pressing the "Down" button. I can now cook using our induction hob. It’s safe, responsive and cuts out the power if things boils over. While more expensive to buy, it is probably no more expensive to run, and certainly worth it!
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Crossword Competition No. 9 (Entry Form Overleaf) Across 1. Tree of the willow family widespread in northern temperate regions (6) 4. In architecture, a horizontal member in a framework (8) 9. Surname of European Footballer of the Year 1978 and 1979 (6) 10. Someone who is training to become a church minister (8) 11. Buckinghamshire location of the Roald Dahl Museum (5,9) 13. Island whose capital is San Juan (6,4) 14. Standard monetary unit of Ghana (4) 16. Star that increases in brightness for a period (4) 18. Delegation of powers to regional governments by central (10) 21. Pop band, formed in 1963, fronted by Peter Noone (7,7) 23. Castle overlooking the River Clwyd completed in 1282 (8) 24. Surname of the English poet who wrote 1914 & Other Poems (6) 25. Greek dish of yoghurt, chopped cucumber, garlic and mint (8) 26. Blade attached to the wheel of a war chariot (6) Down 1. Voracious freshwater fish, Esox lucius, with a pointed snout (4) 2. Membranes that cover the lung and line the chest cavity (7) 3. Figuratively, with the freedom to pick and choose (1,2,5) 5. The Muse of choral song and dance (11) 6. Latin reference to book or chapter already cited; 'in the same place' (6) 7. In 13th century Spain and Portugal, a highly privileged noble (7) 8. Flag flown by British merchant ships (3,6) 12. Writer whose 1992 autobiography is Curriculum Vitae (6,5) 13. Leader of the British Suffragettes (9) 15. Plant of the ginger family used in curry powder and as a dye (8) 17. Wart, especially one on the sole of the foot (7) 19. In non-Catholic churches, an introductory hymn or psalm (7) 20. 1974 science-fiction film with Sean Connery (6) 22. Main river through the city of Peterborough (4)
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Your entry form is overleaf
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