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Look Forward Issue 156 September 2015 Registered Charity No.1153851
Inside Letter from the Chief Executive Page 2 Christmas Cards Page 3 Three Peaks Challenge Success Page 4 RP Conference 2015 Review Page 6
New horizons at RP Fighting Blindness We look forward to 2016 and beyond! It’s been a busy and exciting few months at RP Fighting Blindness; we’ve been preparing for the 40th Anniversary in 2016, a new Chief Executive has joined the ranks at head office, our annual RP Conference in London was a great success, the Helpline Training Weekend has been held and a whole host of fundraisers have taken place across the country. Read on to find out more about what we’ve been up to and how you can get involved!
New Gene Therapy Research Page 8 Sound for Sight 2015 Page 10 Tough Mudder Page 15 Helpline Training Weekend Page 18 Abbott Family Fun Day Page 20
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NEWS
Letter from the Chief Executive Tina Houlihan I’m delighted to have joined RP Fighting Blindness as Chief Executive, and I’d like to take this opportunity to thank the trustees, the team at head office and the charity’s supporters I’ve met so far for making me feel so welcome. RP Fighting Blindness is at an exciting time in its history, and of course marks a major milestone next year with its 40th anniversary. I’m in the process of running through ideas with the charity’s staff and trustees to increase our presence in the sight loss community, improve our information and support services and drive our research programme to new levels. The organisation has an excellent reputation for stimulating research and providing concise, trustworthy information about RP; I want us to build on this and work more closely RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.
with other sight loss organisations, so everyone with RP can feel confident about both their present and future. I look forward to meeting many of our members and supporters over the coming months; there are exciting times ahead for RP Fighting Blindness and we very much appreciate your continued support. Please do feel free to email me with any questions or suggestions you may have regarding the charity on chiefexecutive@rpfighting blindness.org.uk
Do you follow us on Facebook and Twitter? Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity. PO Box 350 Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE)
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FUNDRAISING RESEARCH
RPFB Christmas Cards Christmas will be upon us soon, so don’t forget, you’ll be able to purchase our attractive 2015 Christmas cards on the RPFB website using a credit card, debit card or PayPal account! At just £4 for a pack of six with envelopes plus postage, they’re great value. You’ll also be able to purchase cards by calling the office on 01280 821334. We expect these cards to be available to purchase at the end of September. Once again, talented artist Tina Wray, who has RP herself and has just five per cent vision remaining, has produced two delightful images and donated them to the charity. In addition, the printing of these high quality A5 cards has been donated free of charge, which means every penny of the sale value of the cards goes to support the work of RP Fighting Blindness. Each card contains a simple ‘Season’s Greetings’ message. We’d like to say a big thank you to Tina and her husband Gary for all their hard work on this project. www.rpfightingblindness.org.uk
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EVENTS
Three Peaks Challenge Success! In July, a team of RP Fighting Blindness supporters took up The Three Peaks Challenge 2015 - they had great time while raising money for the organisation!
The Three Peaks Challenge ran from 20 July to 25 July 2015 and took in Mount Snowdon, Scafell Pike, and the mighty Ben Nevis.
Accompanying the party on the challenge was David Head, RPFB’s former Chief Executive, a doctor and an experienced expedition leader. Added to these a local guide joined the group at each site for maximum safety and to add some local knowledge.
As the three highest peaks in England, Wales and Scotland, this represented an exciting challenge to both visually impaired and fully sighted participants alike. The total We had 29 participants on the trek, including RPFB trustee Colin distance walked was roughly 26 miles McArthur and his wife Linda, RP with a total ascent of 9,800 feet. Helpline volunteer Katy Newitt and Everyone agreed it was an amazing, her daughter Emily, Richard Boggie exhilarating experience. who recently featured in our 40th 4
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EVENTS
Anniversary fundraising campaign and his brother Stephen, and a whole host of hardy regular RPFB trekkers who have supported us for years on such challenges. Upon completion, many of the trekkers talked about team spirit, determination and sheer endurance having gotten them through the various challenges. These are common themes in our treks! Approximately £30,000 will be
raised from this amazing trekking challenge - a great fundraising total. We’d like to say a huge thank you to everyone who took part, and to congratulate them on completing The Three Peaks Challenge 2015. It’s no mean feat, whether sighted or visually impaired and everyone put in 100 per cent effort come rain or shine! If you’re interested in taking part in future treks, contact Michelle Carter at Head Office on 01280 821334. www.rpfightingblindness.org.uk
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EVENTS
RP Conference 2015 June saw the annual RP Fighting Blindness conference take place at the Pullman Hotel in London’s Euston.
With over 130 people in attendance, expert medical speakers, presentations from high-achieving patients and exhibition stands to view, the day was certainly a busy one. The conference and our regular patient information days are among the largest gatherings of RP patients and professionals in the UK and we always encourage delegates to talk to and mingle with each other, the charity’s staff, our trustees, the scientists and guest speakers. The conference programme is varied each year and reflects the different facets of the charity’s work: patient support and medical research. Our first speaker was Robert Taylor, RP patient and author of recently published novel Lionheart, who gave some insights into what has inspired him to publishing success. Niall McMurtry, Evidence and Service Impact Project Manager at RNIB, followed 6
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and gave a presentation about empowering those experiencing sight loss. Long-time RPFB member Glen Drew presented the ever popular RP Awards with The Lynda Cantor Founder Award for Contribution to the Future of the Charity going to Bhavini Makwana, The John George Award for Volunteering presented to Sid Pritchard, RP Fundraiser of the Year named as Patrick Moran, and The Roger Green Award for Special Contribution going to RPFB trustee Stephen Jones. Before the scientific presentations got underway, recently appointed trustee Rachael Stevens gave an update regarding the 40th
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EVENTS
respectively, later taking questions from the floor. After this Professor John Marshall MBE, medical trustee at RP Fighting Blindness, presented the award named after him; The John Marshall Award for RP Scientist, to Professor Robert MacLaren.
Anniversary Appeal, and explained how people could get involved next year. Professor Michael Cheetham, Professor of Molecular Cell Biology at the UCL Institute of Ophthalmology and member of the RP Fighting Blindness Medical Advisory Board, played host to the scientific session with talks from Professor Robert MacLaren, Professor of Ophthalmology at the University of Oxford and Professor Alison Hardcastle, Professor of Molecular Genetics at UCL Institute of Ophthalmology. They presented on Developing Treatments for Retinitis Pigmentosa and Genetics and The UK Inherited Retinal Dystrophy Genome Project
The RP Question Time session which followed our scientific speakers is always a great chance for delegates to put their queries to our panel of expert speakers. As ever, the session proved lively and informative, with questions coming from all over the floor about research, genetics and the progress being made on current projects. The day concluded with the organisation’s formal AGM where the formal business matters of the charity were discussed and voted upon. We would like to take this opportunity to thank Retina Implant for their sponsorship of the 2015 RP Fighting Blindness annual conference and would like to thank everyone who attended, and of course the speakers and volunteers who helped make the day possible. www.rpfightingblindness.org.uk
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RESEARCH
New Gene Therapy Research Tweaking photoreceptors to produce a nerve growth protein could open up new avenues of treatment for patients with retinitis pigmentosa, according to new research.
The findings come from a study by an international team of scientists, including researchers in Oxford, Sheffield and London, which showed that gene therapy can provide long-term protection for photoreceptor cells in an animal model of retinitis pigmentosa. Mice lacking rhodopsin, the light sensitive pigment of rod photoreceptors, were used as an animal model of the condition. Four-week-old animals were given doses of a modified virus in one eye in order to make their retinas produce a human protein, called ciliary neurotrophic factor (CNTF). CNTF acts in the nervous system and has been investigated as a treatment in conditions such as amyotrophic lateral sclerosis (known ALS or Lou Gehrig’s disease), but may be toxic at high doses. Using a modified ophthalmoscope to monitor the 8
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retinas of mice, the researchers observed that CNTF preserved photoreceptors, but that the number of cone cells decreased rapidly between 8 - 24 weeks after treatment in animals who received a low dose of CNTF and control animals. They were able to show that the photoreceptors preserved through the treatment retained their function and were able to signal correctly to the brain, as measured by the response of mice to visual stimuli. “Our results in this mouse model of retinitis pigmentosa clearly show that CNTF treatment can both give life-long protection to cone photoreceptors and preserve useful vision... this is a very promising study,” said lead researcher Professor Robert MacLaren, professor of ophthalmology at the Nuffield Laboratory of Ophthalmology. More than six months later, genetic analysis showed that in mice which received high-dose CNTF a number of genes linked with retinal disease were almost
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RESEARCH
90-times more active than in the control mice. Professor MacLaren added: “Our results suggest that directly increasing activity in the class of genes that were upregulated in our high-dose CNTF group has the potential to provide a novel, targeted treatment for retinitis pigmentosa and a range of neurodegenerative diseases.” The research is published in the journal Molecular Therapy.
Other news The RP Fighting Blindness Annual Research Report to April 2015 is available to view on our website; this is a review of research funded by us from April 2014 to April 2015 with lay summaries. The RP Genome Project will be entering its second year in November 2015. We’ll keep you up to date with future developments.
www.rpfightingblindness.org.uk
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FUNDRAISING
Sound for Sight 2015 Laura Westcott, Sound for Sight organiser, explains her motivations for creating this unique musical event. Last year a friend of mine, Yvette Chivers, told me she had a degenerative sight loss condition called retinitis pigmentosa. Yvette explained that she was gradually losing her eyesight and that the condition was currently incurable. I wanted to do everything I could to help her so I spoke to RP Fighting Blindness and asked if they could help me create a "blind" challenge, safely, and in good taste. So they sent me seven pairs of sight-loss simulators that decreased my vision throughout the course of the week, and introduced me to some amazing mentors such as Ashish Goyal, who is the world’s first blind trader and now a friend. I did the challenge and my journey was broadcast each day on Insight Radio and filmed by Iconic Steps. I decided to organise a concert to mark the end of the week on World Sight Day, so I came up with Sound for Sight.
What makes Sound for Sight different to any other concert? The audience wears sight-loss simulators during the show, which not only simulate what it is like to have RP, but also heighten the live music experience by taking the focus away from the visual performance. Last year’s host, Jeremy Vine, said it was the best concert he’d been to and I have to agree. We even received a video message from The Mayor saying there "no better cause than Sound for Sight!" This year, Sound for Sight will take place on Thursday October 8th World Sight Day - at London’s The Tabernacle and also The Mint in Los Angeles - with surprise "headline" artists and performances from Willow Robinson, Izzy Bizu, Luke Friend, Kelvin Jones, Bella Figura and many more. Tickets for the London show are now on sale at www.seetickets.com - just search for ‘Sound for Sight’. For more information visit: SoundforSight.com www.rpfightingblindness.org.uk
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ARTICLE
British Visually Impaired Judo James Thomas, Senior Performance Pathway Manager at The British Judo Association recently got in touch with us as he’s keen to promote VI Judo to members of the sight loss community.
Paralympic sport that has its own European and World Championships, and every four years features in the Paralympic Games.
Specifically aimed towards athletes with a Visual Impairment, VI Judo Judo is one of the world’s most has exactly the same format and exciting and competitive Olympic rules as its Olympic counterparts. combat sports, it is also a martial art The Great Britain Paralympic Judo that is rooted in tradition, a tradition team even train with the Olympic that values respect, self-discipline team on a daily basis at the British and friendship above all else. Judo Centre of Excellence in Walsall, a truly inclusive sport! You may not know however that Judo is also a fiercely competitive British Judo has a thriving VI Judo
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community with players throughout the country enjoying all the benefits of a martial art and competitive combat sport. With the Tokyo Olympic Games five years
away, there is no better time to get involved in this fantastic sport. If you are interested, please email the British Judo Paralympic Team on vijudo@britishjudo.org.uk
Focus on - Jack Hodgson Weight Category: 100kg+ (Heavyweight) Nickname: Big Jack Home Town: Grimsby Age: 19 Visual Impairment: Retinitis Pigmentosa Years Taking Part in Judo: 8 Judo Club: Grimsby Judo Club Where do you train: I’ve just started training at the British Judo Centre of Excellence as a full time athlete with the Olympic & Paralympic Jack’s advice to anyone with a teams. Visual Impairment: Come and have a Highest achievement to date: Silver go at Judo. It’s changed my life. I’ve travelled to some fantastic places at the IBSA World Games in 2015 already in my career including Goal: Win a Medal in Rio and Gold Brazil and Korea, and I am hoping to Medal at the 2020 Paralympics in visit many more interesting places. Tokyo Judo has helped develop my Career Plans: Once I achieve my physical fitness and my confidence, goals in Judo I am planning to I’d recommend it to anyone. You become a PE Teacher never know where it will take you! www.rpfightingblindness.org.uk
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FUNDRAISING
BUPA London 10k 10,000 metres of pure pleasure! The 2015 BUPA London 10,000 takes including, Admiralty Arch, Nelson’s Column, St Paul’s Cathedral, place at 10.00am on Monday May Mansion House, Bank of England, 30th 2016. Leadenhall Market, The Monument, Millennium Bridge, Tate Gallery, Register now for Team RP 2016 Cleopatra’s Needle, London Eye, Big and be part of our Anniversary Ben, Houses of Parliament and Team raising money for the Westminster Abbey. 40th Anniversary Appeal fund! The race starts (and finishes) at The Mall and follows a clockwise route around the City of Westminster and the City of London. Runners pass many of London’s famous sights
If this sounds like your sort of challenge, please call Michelle Carter, Fundraising Events Manager, on 01280 821334 for further information.
Skydive for RP! If you’re looking for a fun way to raise money for RP Fighting Blindness, but not sure how to go about it, why not consider skydiving? All you have to do is raise a minimum of £395 in sponsorship, and you skydive for free! You will be jumping a tandem parachute jump, with an experienced skydiver; no experience or expertise is required. A Tandem parachute jump is suitable for sighted, visually impaired and blind people alike, 14
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so there’s nothing to hold you back from this exciting activity! Want to know more? Email michelle@rpfightingblindness.org.uk if you want to discuss any aspects of this exhilarating fundraiser!
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FUNDRAISING
Tough Mudder - Are you tough enough? If you want to raise money for RP Fighting Blindness this year while undertaking a fantastic physical challenge, look no further than Tough Mudder! Tough Mudder is a 10-12 mile obstacle course designed by the Special Forces to test all-around strength, stamina, teamwork, and mental grit. A number of different course types are available, in different locations across the country to test your abilities! Tough Mudder is not a race but a personal challenge - the goal is simply to complete the course and you’re encouraged to help others complete too. It’s about team spirit! Everyone is welcome and we have guaranteed places! With dates and venues across the UK, all you need to do is choose your date, sign and return your form and get prepared! Just visit www.toughmudder.co.uk, find your event and cause, join the
team and take on your challenge! By visiting the Tough Mudder website you can learn more about the events, see participant photos and get a flavour of the kinds of challenges awaiting you! Previous participants have talked about the exhilarating challenge a Tough Mudder course represents, the team spirit and pure endurance required! We guarantee you’ll feel a huge sense of achievement upon completion! For further information and registration forms contact either Michelle Carter or Karen Murfet at Head Office by calling 01280 821334, or emailing michelle@rpfighting blindness.org.uk. www.rpfightingblindness.org.uk
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ARTICLE
Turning an idea into a reality By Richard King, RPFB member At 47, and having been registered blind now for 15 years, one of the hardest things for me to change was the way I would ride a bike. When the degeneration of retinitis pigmentosa got to the point where I was forced to sell my prized mountain bike, I purchased myself a tandem. Alas, this was just not the same, and with my partner Samantha being hard of hearing, it wasn’t very practical for us to be on two wheels, let alone a pleasure. So we started looking for other ways to enjoy cycling. Just over a year ago, we tried out a side by side, or more commonly what is known as, a "sociable" tandem, and was exactly the alternative to the traditional tandem that we were after, although at three times the cost of a regular tandem, just not something we could afford. So, determined not to let this get in my way, I set about on my quest to create a more affordable option. Having given this quite a bit of thought, I wondered if you could actually take a pair of regular bikes and link them together retrospectively; within a few weeks of research I stumbled across a 16
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company that had already created something similar in the USA. By taking a standard pair of recumbents and joining them together side by side, had achieved the vision that I had had - more importantly, at a much more affordable price! I eventually had these bikes shipped over from the USA but what really spoiled this for us was the cost of importing these all this way. So, the next step was to speak to some engineers and frame builders in the UK and see if we could create something very similar here? To cut a very long story short, for the benefit of squeezing this into the required amount of words, we found someone willing to do exactly this! So far, we have taken a pair of standard bikes that are available here in the UK and are currently testing these with the connections that a local engineer has created for us, with great thanks to the
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ARTICLE charity REMAP. Also on the drawing board is a pair of similar recumbents that I am hoping to do the same with during 2015. Effectively what we are close to achieving is developing a kit that links a pair of bikes together side by side so that it will be universal, i.e. able to fit a varying selection of bicycle frames, is easy to connect and disconnect, just as long as both bikes are identical, and is affordable. Having set about doing this, I’ve also realised that this could take me into a whole new field of keeping myself employed, and with special thanks to Bucks Vision, I have been able to secure funding that has allowed me to attend some short but very useful bicycle maintenance courses in Aylesbury so that one day I might actually be able to set up a small workshop and fulfil my passion of servicing, repairing and more crucially, creating a more affordable way into accessible cycling for all of us! All of us at RP Fighting Blindness wish Richard every luck in this exciting venture! We will keep readers informed as to how he gets on!
Key Appeal Thank you! We’d like to say a big thank you to everyone who has been supporting the RP Fighting Blindness Key Appeal - due to the nature of this appeal, it wouldn’t be economical to thank everyone individually who have sent in their old keys, but we want you to know how very grateful we are for your support.
RPFB supporter Jackie Marshall has kindly donated many, many keys to the appeal and we’d like to also thank Unipart Rail which has generously covered the postage for her donations! When we have a few bucket loads of keys we’ll be taking them to a scrap yard to have them weighed for their value. We’ll let you know how we get on! If you have any old keys you’d like to donate, please send them to: The Key Appeal RP Fighting Blindness Buckingham PO Box 350 MK18 1GZ www.rpfightingblindness.org.uk
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SUPPORT
Helpline Training Weekend July saw the annual RP Fighting Blindness Helpline Training Weekend take place, at Kents Hill Park Training and Conference Centre in Milton Keynes.
Spread over three days, the Helpline Training Weekend covers a range of topics in order to inform and educate our Helpliners about the latest research, medical advances and telephone call handling skills. We heard talks and presentations from a number of external speakers, covering topics including technology, support available for children and emotional skills training. Representatives from Blind Children UK, Thomas Pocklington Trust, RNIB and SOS Special Educational Needs presented about various topics, giving our volunteers the most up to date information and advice on how to handle certain queries. Our newly joined Chief Executive 18
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Tina Houlihan came to greet the team and meet everyone. She gave a short talk about the importance of such support services and how much she was looking forward to working with all the volunteers in future and building on the success of our various information and support services. The Helpline Training Weekend is also important because it allows our Helpliners, whom despite being part of a strong united team, rarely get the chance to physically meet and share experiences due to being spread across the country. We feel it is vital that we bring together the team, with members of the office staff, to align best practice and discuss openly how our patient support services can be improved. An element of socialisation is involved too, with group dinners, a quiz and informal breakout groups to chat. If you think you might be interested in volunteering on either our telephone or email helpline services, please contact head office on 01280 821334 and speak with Denise Rawden, Helpline Coordinator.
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FUNDRAISING
Community Fundraisers Thank you! Sadly we just don’t have the room to individually acknowledge all the amazing community fundraisers who work tirelessly to raise funds for our work, but we want all of you to know how very valued your efforts are! Below are a few recent examples of community fundraisers doing their bit for RP - thanks guys! Sisters-in-law Clare Newgass and Kate Denning have completed a cycle ride fundraising challenge in aid of RP Fighting Blindness; they cycled from Santander in North Spain to Roscoff in North Brittany, France, over three weeks. They’ve raised roughly £1,000 so far and cycled 922 miles door to door over 21 days. We’d like to say a big thank you to them for their amazing efforts!
Chandlers Ford, Winchester and Andover before completing their challenge in Basingstoke. The trio undertook their 137 km ride to raise money for RP research and we’d like to thank them for their dedication!
In July, William, Cole and Ethan Halliwell of Cheshire held a In June, three employees of fundraising event Leightons Opticians & Hearing Care for RP Fighting teamed together to fundraise for RP Blindness at All Fighting Blindness. Cyclists Saints Catholic Stephen Wordley, Mark Davies and Primary school. Conor O’Kane set off from Poole, They raised £220 for us and we’d passing through Totton, Stag Gates, like to thank them for their support! www.rpfightingblindness.org.uk
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FUNDRAISING
Abbott Diagnostics Family Fun Day
In early July our Communications Officer Thomas O’Neill attended the Abbott Diagnostics Family Fun Day, held in aid of RP Fighting Blindness. We’ve had a relationship with Abbott for some time now, and have been lucky enough to be the charity beneficiary of other such Fun Days.
raffle with great prizes, a table tennis tournament, giant Jenga and giant Connect-4 and a free ice cream van! Later free pizza was available too, plus a mocktail bar, with a great range of soft drinks to enjoy. For those who didn’t want to miss the coverage of Wimbledon, televisions were set up to watch the matches.
Mark Baxter, Abbott employee and RPFB member, has RP himself, and has a long history of fundraising for the organisation and was instrumental in organising the event. We’re delighted to report that the day was a great success and everyone very much enjoyed themselves!
We were presented with a cheque for £1,500, for which are tremendously grateful. We’d like to say a big thank you to Mark, and everyone at Abbott who helped make the day such a successful one.
Things kicked off mid-afternoon with a swingball tournament, a 20
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We’d also like to thank Mark for recently completing The Three Peaks Challenge – his fundraising never ceases!
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ARTICLE
The ‘Power’ of the Symbol Cane a true story By Mike Bailey We know that some people are resistant to adopting a symbol cane, for a myriad of different reasons. Mike Bailey, who has RP, wanted to share his story to encourage others to consider using a symbol cane, after discovering what a difference it made to navigating the streets.
reactions and if I’d remember to use it the way I’d been shown. I had my route planned, I would walk through the arcade, turn right along the High Street, cross the pedestrian crossing to the bus stop.
The bus stopped, it was time! I stepped off the bus, opened my cane and started walking… I couldn’t believe it! After walking through the When my Rehab Officer gave me my arcade, I hadn’t had to apologise first symbol cane, I wasn’t ready or once for bumping in to people and confident enough to face using it. had said “thank you” at least ten I felt embarrassed and thought that times! With my tunnel vision I could everyone would be looking at me. see people ahead of me moving I mentioned this to a friend of mine aside to let me through, it was like who kindly offered to take me to a the parting of the Red Sea! shopping centre where no-one That day, I had overcome my fear of knew me, the following Saturday. using the symbol cane and realised I was really anxious and was the ‘power’ of the symbol cane is in dreading the day coming so I its ability to inform other people decided to just go for it myself! about my visual impairment without On the Thursday I left work and got me having to explain. It gave me back the bus to my nearest town centre. some of the pride and independence The palms of my hands were I felt I’d lost when I was diagnosed sweating, I was so nervous! As I with retinitis pigmentosa. held the folded cane in my hand I If you’d like further information was imagining myself stepping off the bus and opening the cane out, I about symbol cane use, you can call was worried about other peoples’ the RP Helpline on 0845 123 2354. www.rpfightingblindness.org.uk
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NEWS Obituaries
Lord Mark Birdwood It is with great sadness we must report the death of Lord Mark Birdwood; a long-time supporter of RP Fighting Blindness and a man who did much to build the charity in its early days. He was a trustee of the charity for many years and had represented the organisation at various events. He is warmly remembered by many staff, trustees and members. Lord Birdwood passed away in July peacefully. He served as the chairman of Steeltower Ltd., a property development company which he co-founded. Lord Birdwood had considerable experience as a director of quoted and private companies. He joined J Walter Thompson as a copywriter and was Creative Director of another London agency and also Development Director for Cambridge Consultants (now Cambridge Communications). He served as an Independent NonExecutive Director of Character Group PLC from September 1995 until his passing. Lord Birdwood was also a director 22
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of Martlet, a company that he owned. He served as a Member of the Advisory Board at Strategic Communication Laboratories Limited and was an honorary Research Associate of the Centre for Philosophy of Natural and Social Sciences at the London School of Economics and a patron of Mansfield College, Oxford. Lord Birdwood was educated at Radley and Trinity College, Cambridge, before commissioning with the Royal Horse Guards. We send our most sincere condolences to his family, and will always remember his many valuable contributions to the organisation which have helped shape it today.
Margot Edmonds Peter Jackson, Chairman of our Oxfordshire Local Group, recently informed us that Margot Edmonds, a staunch supporter of RP Fighting Blindness, had sadly died. Margot had worked with the charity for many years and we extend our
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NEWS sympathies to her family. She died on 12 June at the age of 81 after a brave and prolonged battle with leukaemia three years after losing her much-loved husband Derek. She was a remarkable person who left an imperishable legacy to RP both in Oxfordshire and nationally. Her connection with RP began in the mid-1990s when she met Jessie Mole, who was Lynda Cantor’s aunt, and who was Margot’s neighbour in Oxford. When Jessie mentioned that she was keen to set up an Oxford branch of what was then BRPS, Margot decided to help and became secretary, handling the meetings, collections, and visits to interesting places while Jessie did the finances. They began by writing to registered RP patients in the Oxford area and the information they gathered formed the foundation of the branch they founded. RPFB acknowledged her great service by awarding her the John George Award for Volunteering at the 2012 annual conference. This was a fitting way of acknowledging more than 15 years of dedication to RP and she was thrilled and, being a modest and self-effacing person, very surprised. We send our condolences to her family on their loss.
Christmas Prize Draw 2015 A book of ten tickets was included in the last issue of Look Forward, for you to either buy yourself, or perhaps sell to friends. There is no obligation upon you to do this, but if you choose not to get involved with this year’s raffle, we would appreciate you returning the books to us as we can sell them to other people. 1st Prize - £200 of High Street vouchers, as chosen by the winner 2nd Prize - £100 of High Street vouchers, as chosen by the winner 3rd Prize - £50 of High Street vouchers, as chosen by the winner Plus other great prizes! Please make cheques payable to RP Fighting Blindness and post payment and counterfoils to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ The draw will be made at head office on Tuesday 15 December 2015. All ticket counterfoils must be returned by 12 December 2015. www.rpfightingblindness.org.uk
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Do you live in Barking, Dagenham or the surrounding areas? Looking for a chance to socialise with other visually impaired people? RP Fighting Blindness member Bhavini Makwana, who is also one of our helpline volunteers and recent winner of The Lynda Cantor Founder Award for Contribution to the Future of the Charity, has launched a social group which welcomes anyone with any form of sight loss, and their friends and family members. When:
Every third Monday of each month
Time:
6pm - 8pm
Where:
Crowlands Heath Golf Club, Wood Lane, Dagenham, Essex, RM8 1JX
If you’d like to know more or have any queries, or to register your interest in future meetings: Visit:
SocialEyes on Facebook and like the page
Email:
bhavinimakwana660@hotmail.com
Telephone: Laura on 07914 770 909 Meeting points from the closest bus stop are available, but it is crucial you let them know you would like to be met! Supported by ELVIS & Barking and Dagenham Sensory Team