96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 1
Look Forward Issue 150 April 2014 Registered Charity No.1153851
Inside Retinal Awareness Group (RAG) Meeting Reminder Page 3 RPFB Annual Conference Page 4 The Retina International World Congress of Ophthalmology Page 7
RPFB looks to the future Charity moves forward following organisational changes With our wide reaching organisational changes bedding in and new processes underway, we can now look forward to making the rest of 2014 a real success. With Spring springing we are excited to hear of fundraising events being planned by our supporters throughout the year and medical research projects reporting important developments. The year of 2014 looks set to be a busy one!
Gene Therapy Trial Results Page 10 Scientists ‘Print’ New Eye Cells Page 12 Gene Team Update Page 14 Tandem Challenge Success Page 20 Online Giving Page 26
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 2
NEWS
Letter from the Chief Executive David Head MBA With the days feeling longer and the evenings becoming lighter, we’re feeling optimistic at head office. We’ve been through several months of upheaval and organisational changes which, while inconvenient to implement in the short term, we feel will benefit all members and supporters in the long term. Part of these changes involved existing members updating their records with us. I would like to take this opportunity to thank everyone who has responded, your continued support is essential and appreciated. 2014 is promising to be an interesting year with a host of fundraising events, the RP Fighting Blindness Annual Conference (see page four) and patient information days. Excitingly, The Retina International 2014 World Congress of Ophthalmology is being held in Paris this year (see page seven) and several medical research 2
The RP Helpline 0845 123 2354
projects are showing promising signs of progress. On a personal level, I am very much looking forward to leading an intrepid group of RP’ers on a trek in the Sahara Desert next month. This will be a fantastic experience and should raise £30,000 or more for the charity. I look forward to seeing many of you during 2014 at our various events and activities.
RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families. PO Box 350 Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE)
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 3
EVENTS
Retinal Awareness Group (RAG) meeting reminder! The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend conference at the Carousel Hotel across 28 – 30 March 2014. The RAG social and activity weekend regularly attracts over 100 attendees, some excellent medical speakers and a wide range of activities. RAG also aims to provide information and advice about living with RP, Usher Syndrome and many others. RP Fighting Blindness is proud to deliver this event in partnership with volunteers from our NorthWest Group. We have exclusive use of the hotel with full modern facilities including a lift to all floors and easily accessible rooms. All presentations are amplified and a loop system is made available in the main conference room for those with hearing loss. A grass area and other facilities for guide
dogs are close by. The cost per person for a double or twin room is £155, which includes two nights’ bed, breakfast, evening meal, lunch on Sunday and servings of tea and coffee over the weekend. A full programme of speakers and activities is available on the RP Fighting Blindness website by clicking on ‘Information & Support’ and looking at the ‘Our Main Events’ pages. This year’s fascinating speakers include Ahoora Baranian, PhD Student, Anglia Ruskin University, Professor Paulo E. Stanga, Professor of Ophthalmology & Retinal Regeneration, University of Manchester, Robin Spinks from RNIB, Paul Macmillan from Action for Blind and David Head from RP Fighting Blindness among others. This is a brilliant opportunity to hear from leading scientific speakers, socialise with others with RP and learn about issues affecting you. To book your place, please contact the Carousel Hotel on 01253 402642.
email: info@rpfightingblindness.org.uk
3
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 4
EVENTS
The RP Conference 2014 As last year, the 2014 RP Conference is being held at the Pullman Hotel on Euston Road, London.
important part of the RPFB calendar, bringing together around two hundred people to hear from our top speakers, learn from each other, meet the RP Fighting Blindness team, as well as socialise and catch up with old friends. The event also incorporates the charity’s formal AGM as the last session of the day. Members and subscribers of RP Fighting Blindness are welcome to take part at no charge together with a partner or guide (though donations towards event costs are always welcome of course!)
The hotel is just a few moments’ walk from both King’s Cross St Pancras and Euston stations, making it a convenient location for those travelling from afar. A buffet lunch will be provided. Members, subscribers, patients, family and friends, supporters, clinicians and researchers alike are welcome to attend the RP Fighting Blindness Conference on 21 June 2014 to share information, research news and everything RP. This one-day event is always an 4
Office Telephone 01280 821334
Non-members and non-subscribers are equally welcome at a cost of £30 each, which includes refreshments all day and the buffet lunch. For members and non-members alike, it is essential that places are booked, as seating and catering arrangements are made in advance. Please contact Michelle Carter at Head office on michelle@rpfightingblindness.org.uk or call on 01280 815900 to confirm the number of places required. Non-members and non-subscribers will be invoiced.
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 5
EVENTS
restoration and preservation of sight Professor Eberhart Zrenner Chair-Professor of Ophthalmology Institute of Ophthalmic Research, University of Tuebingen
Preliminary Conference Programme 21 June 2014 (Morning) 09:00 Exhibition and registration open 09:55 Conference Welcome David Head, Chief Executive
Prospects for stem cells as a therapy for retinal degeneration Professor Majlinda Lako Professor of Stem Cell Science Institute of Genetic Medicine, Newcastle University
10:00 Session 1: Speakers Presentation: Inspiration Annalisa D’Innella, RP Patient and journalist Presentation: Presentation: A patient’s perspective Speaker To Be Confirmed
14:00
Chaired by Professor Paul Bishop An interactive session in the style of BBC Question Time.
10:50 Tea and Coffee Break (20 mins).With a chance to view the stands and chat 11:10
Your chance to quiz a panel of four eminent researchers and clinicians. For the panel, our keynote speakers above will be joined by:
Session 2: The RP Award Presentations The John George Award for Volunteering The RP Fundraiser of the Year The Roger Green Award for Special Contribution
Professor John Marshall MBE Professor of Ophthalmology Institute of Ophthalmology and Moorfields Eye Hospital, UCL
The Lynda Cantor (Founders) Award Short Story Competition Award 11:30
12:00
Session 5: RP Question Time
Last panel member to be confirmed; most likely a clinician.
Session 3: Speaker Support for patients with RP Speaker To Be Confirmed
15:00
Lunch - Lunch is provided and the stands will remain open
Tea and Coffee Break (30 mins). With a chance to view the stands and chat
15:30
Chairman's Conference Address
Conference Programme 21 June 2014 (Afternoon) 12:55
Reconvene
13:00
Session 4: Scientific Speakers Introduced by Professor Paul Bishop, Professor of Ophthalmology and Matrix Biology Manchester University Chair of the RP Fighting Blindness Medical Advisory Board The application of technology to the
Mr Don Grocott Chairman of the Board 15:45
Session 6: Annual General Meeting The formal business matters of the charity Details of this session will be provided separately to RP Fighting Blindness members. Please note that nonmembers are welcome to attend but will not be entitled to speak or vote on any resolution.
16:45 Event close
www.rpfightingblindness.org.uk
5
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 6
NEWS
RPFB website updates completed Over the past few months the RP Fighting Blindness website has undergone a thorough review of its information pages. The ‘About RP’ and ‘Research’ pages have been updated to reflect the latest knowledge and understanding regarding RP and other related conditions. As you will all be aware, research and understanding of RP and other related conditions is always progressing. This is why we committed to ensuring our online resources of information are kept up to date, along with providing updates regarding research programmes and patient trials. Thomas O’Neill, Communications Officer at RP Fighting Blindness commented “The RP Fighting Blindness website is a globally respected source of information, with visitors from all
over the world. In 2013 the website received almost 83,000 unique visitors and a massive 3.5 million individual page hits. This is solid proof that we are considered a reliable authority for guidance and information.” We are grateful to Dr Michel Michaelides BSc MB BS MD FRCOphth FACS of Moorfields Eye Hospital and UCL Institute of Ophthalmology for originally authoring these sections and compiling the recent review of information, statistics and research.
Social media 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.
6
The RP Helpline 0845 123 2354
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 7
NEWS
The Retina International 2014 World Congress of Ophthalmology We are pleased to inform you the time and venue for the next Retina International World Congress of Ophthalmology has been confirmed. The 2014 event will be held in Paris, 27 – 29 June. Held at the Pullman Montparnasse Hotel, situated in the historical heart of Paris close to the Eiffel Tower, the 18th Retina International World Congress of Ophthalmology promises to be very interesting with three days of French and internationally respected scientists giving a full overview of the latest medical understanding of eye diseases.
particular conditions including RP, optic neuropathies and Usher syndrome. Delegates will also be offered tours of beautiful Paris in addition to the scientific programme.
Some sessions will be dedicated to
For further information about the event, to view the preliminary programme or to register your attendance, please visit the Retina International website event page on www.retina2014.com.
Stamp Appeal!
RP Fighting Blindness is relaunching its Stamp Appeal.
In years gone by we collected used stamps from members and bulksold them to collectors. Following contact with several different stamp dealers recently, we have decided to trial this again in 2014. It’s very simple – if you could tear off stamps from your letters and save them until you have a fair number
(perhaps enough to fill a jiffy bag or similar) and post them into the office, we can sell them on. There’s no need to steam or peel them, just tear the corner of the envelope off! Please label your envelope ‘RPFB Stamp Appeal’ when you post them in. We’ll let you know how we get on in later issues of Look Forward.
email: info@rpfightingblindness.org.uk
7
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 8
RESEARCH
RPGR X-Linked RP Clinical Study to Build on Earlier Reported Husky Dog Trials A study intended to lead to human clinical trials, involving 40 patients, is planned at UCL Institute of Ophthalmology. The objective is to use gene therapy to tackle X-linked retinitis pigmentosa (XLRP) caused by faults in the RPGR gene, one of the most common gene defects that cause RP. The researchers are currently preparing the data needed to design the trial and secure ethical approval. This process is being aided by the introduction of new imaging technology called ‘Adaptive Optics’ to more accurately target specific cells in the retina during the therapy. Mr Michel Michaelides, Consultant Ophthalmologist at Moorfields Eye Hospital / UCL and one of the lead researchers, said “We have recently established the most advanced retinal imaging technology available in Europe (which) enables us to image the retina with unparalleled precision and allowing 8
Office Telephone 01280 821334
the cone and rod photoreceptors to be visualised in real time. As well as allowing earlier diagnosis and improved monitoring this gives us a much more accurate assessment of potential clinical trial participants. This ability is of fundamental importance for our planned trial for XLRP caused by genetic faults in the gene RPGR.” A healthy retina converts the light coming into the eye into images. In RP, the retina degenerates as a result of a genetic defect. The mutation which causes this may be recessive (two copies of the defective gene must be present), dominant (one defective gene causes the problem) or X-linked (the defect is found on an X chromosome).
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 9
RESEARCH The study follows extensive testing of gene therapy in animal models of XLRP, including, as reported in Look Forward back in 2012, important work at the University of Pennsylvania. There, scientists developed a treatment for XLRP in Siberian Husky dogs, a breed in which the condition occurs naturally. At the time it was stated that “…success in treating the initial study group also holds promise for treating XLRP in humans...”
to neurons which send signals from the retina to the brain. At the time the researchers however did make it clear that it was a preliminary study, using a small number of dogs, and that longer term testing and then clinical trials would be needed to assess safety and effectiveness of the treatment under a variety of circumstances.
What was also notable was that the treatment appeared to restore cells in advanced cases, and there were indications of repaired connections
More information and contact details in respect of the UCL study is available online at tinyurl.com/xlrpstudy
The team at UCL Institute of Ophthalmology plan to use the technology and principles proven in these and other animal studies, and One of the important aspects of the in clinical trials for other types of trial conducted at the University of RP, in their proposed XLRP trial. Pennsylvania was that both types of photoreceptor cells in the retina David Head, Chief Executive at RP Fighting Blindness, said “It is were treated, while in previous exciting to see the researchers we work, only rods or cones were targeted. In order to restore vision, have been supporting preparing an increasing number of clinical trials. the researchers used a subretinal Also, it is fascinating to follow the injection of normal Retinitis threads of work from animal Pigmentosa GTPase Regulator (RPGR) gene, which is generally the models to human studies. We are optimistic that as studies and trials faulty one in XLRP. In addition, a for more forms of RP are developed specific piece of genetic code, or progress will become faster, as the “promotor,” was attached to the underlying technology is further healthy RPGR gene ensuring it developed and more extensively would only activate in the proven.” appropriate cells.
www.rpfightingblindness.org.uk
9
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 10
RESEARCH
Promising first results in gene therapy trial for inherited blindness The first clinical trial of a gene therapy for an inherited cause of the progressive blindness choroideremia has shown very promising initial results which have surpassed expectations of the Oxford University researchers leading the study. The aim of the treatment in this study was to get the gene therapy into the cells in the retina of the eye without causing damage. After six months, however, the patients actually showed improvements in their vision in dim light and two of the six were able to read more lines on the eye chart. A total of nine patients have now had one eye treated with the gene therapy in operations at the Oxford Eye Hospital, part of the Oxford University Hospitals NHS Trust. The therapy is given in one eye to allow comparison with progression of the disease in the other eye. Results at six months are now reported for the first six patients in The Lancet medical journal. The first patient to have the operation has now been followed up for over two years. Based on the success of the treatment in the first six 10
The RP Helpline 0845 123 2354
patients, three more have recently been tested at a higher dose. Professor Robert MacLaren of the Nuffield Laboratory of Ophthalmology at the University of Oxford, and a consultant surgeon at the Oxford Eye Hospital and honorary consultant at Moorfields Eye Hospital, led the development of the retinal gene therapy and this first clinical trial. He says: “It is still too early to know if the gene therapy treatment will last indefinitely, but we can say that the vision improvements have been maintained for as long as we have been following up the patients, which is two years in one case.” “In truth, we did not expect to see such dramatic improvements in visual acuity and so we contacted both patients’ home opticians to
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 11
RESEARCH It is also the first time that a gene therapy has targeted the principal light-sensing cells in the retina, known as photoreceptors. This means the approach has relevance for other, far more common causes of blindness where these lightsensing cells are affected, such as The gene therapy approach retinitis pigmentosa and agedeveloped by Professor MacLaren’s related macular degeneration. team uses a small, safe virus to David Head, Chief Executive at RP carry the missing CHM gene into the light-sensing cells in the retina. Fighting Blindness said, “Prof In an operation, the patient’s retina MacLaren’s work is very significant, is first detached and then the virus and at RP Fighting Blindness we are is injected underneath using a very delighted to see such positive news emerging from Oxford. Gene fine needle. therapy is a key line of RP research The aim is for the CHM gene, once and, as we have suggested on many delivered into the cells of the occasions, is very likely to result in retina, to start producing protein viable treatment at the early stage and stop the cells dying off. ‘If we of various retinal dystrophies, of were able to treat people early, get which choroideremia is just one. I them in their teens or late should point out that RP Fighting childhood, we’d be getting the virus Blindness has not been funding this in before their vision is lost,’ particular project - credit for that explains Professor MacLaren. ‘If the must go to Fight for Sight and treatment works, we would be able others - but retinal dystrophy to prevent them from going blind.’ patients around the world should This is the first time a gene therapy take an interest in the results and progress made and as the patient for an eye condition has been tested in people with full 6/6 visual organisation representing people acuity. This suggests the approach with RP in the UK we are certainly following this with great interest.” has promise for treating people get current and historical data on their vision in former years, long before the gene therapy trial started. These readings confirmed exactly what we had seen in our study and provided an independent verification.”
early on before too many cells in the retina have been lost.
Read more about this story on the RPFB website. www.rpfightingblindness.org.uk
11
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 12
RESEARCH
Scientists 'Print' New Eye Cells Scientists say they have been able to successfully “print new eye cells” that could be used to treat sight loss. The proof-of-principle work in the journal Biofabrication was carried out using animal cells.
including the light-sensitive photoreceptors.
Prof Jim Bainbridge of London's Moorfields Eye Hospital said: "The finding that eye cells can survive the printing process suggests the exciting possibility that this technique could be used in the The Cambridge University team future to create organised tissues responsible for the project say it for regeneration of the eye and paves the way for grow-your-own restoration of sight. Blindness is therapies for people with damage commonly caused by degeneration to the retina. More tests are needed of nerve cells in the eye. In recent before human trials can begin. years there has been substantial progress towards the development At the moment the results are of new treatments involving cell preliminary and show that an transplantation." inkjet-type printer can be used to “print” two types of cells from the Professor John Marshall, one of our retina of adult rats; ganglion cells longest serving trustees and glial cells. The cells remained commented, “It would seem that healthy and retained their ability to the cells have survived the process survive and grow in culture. of passing through the small Co-authors of the study Prof Keith aperture [during printing] and are Martin and Dr Barbara Lorber, from viable. I'm not clear however that the John van Geest Centre for Brain they will sustain the geometric matrix in which they are laid down Repair at the University of in... It's an interesting paper but... Cambridge, said: "Although our the matrix laid down in the retina is results are preliminary and much hugely dependent upon more work is still required, the aim innumerable chemical gradients laid is to develop this technology for down during embryogenesis. I do use in retinal repair in the future." [however] think this will be far more They now plan to attempt to print useful for creating artificial corneas using other types of retinal cells, than artificial retinas.” 12
The RP Helpline 0845 123 2354
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 13
RESEARCH
Stakeholder Liaison Group Meeting In January, David Head attended the Stakeholder Liaison Group - or SLG - meeting that is associated with one of our current research projects. It follows on from a project that was funded by the National Lottery over the period 2009 - 2012 and for which the SLG concept was created.
(drugs) being able to intervene in the cell chemistry involved in retinal degeneration in Rhodopsin RP. In simple terms, the team at the UCL Institute of Ophthalmology led by Professor Mike Cheetham are testing potential candidate drugs in mice and rat models of Rhodopsin RP, and looking at their effect on retinal cells. It’s fascinating work, especially seeing the detailed The idea is images produced now by the new technology used to see how the simple enough - a retina has developed or regular, but degenerated. not too Meeting and talking to patients frequent, helps the researchers understand meeting how important this is to our between members and other patients, and the research team, the charity’s makes it all very “real”. We also feel representatives, and several confident that the meetings help us patients with an interest in the all understand the way the team at particular project work. What it has UCL works, the problems they face, done is improve understanding and the issues around working with empathy all round and we intend to animals, and of course some of the use the SLG model again in another science - albeit at a very basic big project being developed at the level. This was the first of probably moment. half a dozen meetings over the This meeting was at a project three years of the project and we exploring the potential of are already looking forward to the pharmaceuticals to treat RP, next one. We will write more about specifically looking at the this in future issues of Look possibility of certain molecules Forward and keep you updated. www.rpfightingblindness.org.uk
13
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 14
RESEARCH
Gene Team Appeal Update As many of you will be aware, RP Fighting Blindness has committed to investing a total of £750,000 into RP gene therapy research at UCL Institute of Ophthalmology over a number of years as an ongoing project.
from more and more people with RP.
Mr Michel Michaelides, a fellow researcher at UCL with Prof. Robin Ali, wanted to thank you all for your generous contributions to the Gene team Project, and wrote to us to express his thoughts: “The money raised to date is truly impressive!” This project is intended to translate he commented. “We are making the scientific advances made over sustained progress in our ambition recent years into clinical trials and to start new gene therapy trials for potential treatments. The project both early onset and later onset is led by eminent researcher forms of retinitis pigmentosa in the Professor Robin Ali who has built near future. We have made an outstanding team of scientists advances both in the laboratory around him. and in our ability to characterise We had enjoyed great success last retinal structure and function in year, with an aim to raise £145,090 detail. The RPFB fundraising is at the heart of this endeavor. To in 2013, with the actual amount realise our aims we need this to raised coming in at £167,129! This was a brilliant result and the extra continue at the same impressive money generated last year is being pace to thereby help accelerate progress.” put aside to be bolster the next phase of Gene Team funding, due to You can find out more about the start shortly. We feel sure that 2014 Gene Team, the work we are funding will prove even more successful and how you can donate to this with the project gaining ground fantastic project by visiting scientifically and garnering interest www.geneteam.org.uk. 14
The RP Helpline 0845 123 2354
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 15
RESEARCH
Inherited Retinal Disorders Now Leading Cause of Blindness A study published in the British Medical Journal last month has indicated for the first time that inherited retinal disorders (IRD) account for the greatest number of people certified blind across England and Wales. The study covered those aged 16 - 65, ie people of working age, and analysed the reports on over 1,750 CVI’s (Certificate of Visual Impairment) returned in 20092010.
true increase in incidence rates”.
Professor Peng Khaw, Director of the NIHR Biomedical Research Centre at Moorfields Eye Hospital and UCL Institute of Ophthalmology, said "This is a very important finding. It shows that what were thought to be ‘rare inherited retinal diseases’, together are now the commonest cause of certifiable blindness in working adults. This emphasises the need for research and the development of new treatments such as novel drugs, gene, cell and bionic The finding is important because implants for these diseases. The UK for the first time in at least fifty government and charities have years diabetic retinopathy has not been reported as the largest cause taken a leading role in developing therapies for these previously of blindness. The researchers untreatable diseases, with the first ascribe this to improvements in screening and care for people with person in the world treated with diabetes rather than a real increase gene therapy for retinal disease in IRD numbers, though they do say here at the NIHR centre only a few that “…The progress made over the years ago. This provides a great last decade in molecular genetics / stimulus to encourage further patient support and research into diagnostics and the increasing avenues of research / clinical trials all these exciting new treatment modalities, including the national for IRD with widespread media rare disease initiatives, which give coverage may plausibly have resulted in … increased clinic visits new hope to people with these and thereby registration, without a conditions." www.rpfightingblindness.org.uk
15
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:41 Page 16
NEWS
The Cinnamon Trust Our founder Lynda Cantor wanted us to share some information with you about an organisation she holds in high regard, The Cinnamon Trust. It’s the only specialist national charity for people in their later years and their much loved pets. A network of 15,000 volunteers assist owners to provide vital loving care for their pets. Volunteers will walk a dog every day for a housebound
owner or foster pets when owners need hospital care for example. If you would like further information about The Cinnamon Trust, please visit www.cinnamon.org.uk or call 01736 757 900.
Foreign Currency Appeal Update In the last issue of Look Forward, we asked if any of you had any foreign currency lying around in a drawer or flight bag from your last holiday, or if you had old notes or coins from defunct or outdated currencies. We’re excited to tell you that this appeal is going well and has already generated several hundreds of pounds through notes and old travellers cheques alone, with much more expected when we sort the coins we’ve received!
ongoing project. If you have any random coins or notes floating around, please do send them in! Please label your envelope: RP FCA PO Box 350 Buckingham MK18 1GZ
We want to thank everyone who has sent in their notes and coins so far - the response has been brilliant! As this fundraising idea is working well, we’re going to run it as an Thanks for your support! 16
The RP Helpline 0845 123 2354
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 17
RESEARCH
The effect of Retinitis Pigmentosa on Activities of Daily Living The Research group at Anglia Ruskin University would like to thank all those who participated in the first questionnaire in this study. The numbers of respondents has been overwhelming and they are grateful for that. They are still analysing the data, but initial results are proving very interesting. Ahoora Baranaian will be presenting some of the findings in March at the RAG weekend in Blackpool. Based on the results from the first questionnaire, they would like to invite you to participate in the second questionnaire. You can access the questionnaire from the University’s web page which is below:
It is hoped that this research will increase independence and quality of life among people with RP.
tinyurl.com/rpquestionnaire
The team would love to hear from you. If you would like to be involved or require any further information, please contact them using the information below:
For this questionnaire the team are interested in the views of both people with RP and people who support people with RP.
Ahoora Baranian (PhD student) Phone: 0845 196 2869 Email: mohammad.baranian@ student.anglia.ac.uk
Their ultimate aim is to provide help Dr Matthew Timmis, and advice on how to make Dr Keziah Latham & everyday tasks easier to complete. Professor Shahina Pardhan email: info@rpfightingblindness.org.uk
17
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 18
FUNDRAISING
Cycle Challenge from Gibraltar to Aviles Eighteen year old twins Annabel and Francesca Warley recently completed a cycle challenge to raise funds for the charity, raising over £5,000! The intrepid pair cycled more than 700 miles from Gibraltar to Aviles on the north coast of Spain; quite an achievement we’re sure you’ll agree! RP affects some of the twins’
close relatives and they wanted to contribute to the ongoing research we fund. We want to thank them for their amazing efforts and all their hard work, it’s very much appreciated.
Run for RP Fighting Blindness! Enjoy running and want to fundraise for RPFB at the same time? The charity is involved in a wide range of different running events from the Virgin London Marathon, to the BUPA 10K to the Adidas Half Marathon at Silverstone. Why not sign up to Team RP and raise much needed funds for continued research into finding a cure for RP? Every year we are delighted with the number of members and supporters who don their running shoes to help our cause - and we want you! Our runners consistently tell us the sense of achievement they feel once they have completed an event, bolstered by pride at 18
Office Telephone 01280 821334
raised much valued funds for RPFB. If you’d like to know more, or sign up, registrations are open for a number of running events in 2014. Call Michelle Carter at the office on 01280 821334 for further information or email michelle@rpfightingblindness.org.uk
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 19
FUNDRAISING
RPFB Fundraising in Cyprus Chris McArthur, son of longstanding RPFB trustee Colin McArthur helped raise money for the charity recently in a rather novel way! He dyed his beard and hair (styled into a rather fetching mohican!) different colours each week during 'Movember' in aid of the charity, raising an impressive €1,500! We smiled when we heard of his exploits and very much enjoyed the picture we were sent of him! On another happy note Chris recently
got married to his partner Mandy and we'd like to like wish them our congratulations! We’re sure we’ll hear more of Chris’ fundraising efforts in Cyprus in the years to come!
Ceilidh Fundraising! Kathleen Batey, long-time RPFB member and dedicated fundraiser for the charity, last year held a Ceilidh to raise money for our cause. This proved a great success, with around 40 people attending and £600 generated from the event! A raffle and bar were run and we’re told everyone had a great time. A very generous further donation of £500 came of the back of the Ceilidh, from a Mrs Nicola Quigley,
Managing Director of Chris Quigley Education Ltd for which we are most grateful. Kathleen also tells us that her local golf club will be nominating RP Fighting Blindness as its charity for its next Captain’s Day, proof that her fundraising spirit is inspiring others to help the organisation. We would like to take this opportunity to thank Kathleen and her family for all their hard work over the years, as it’s this kind of fundraising that has helped RP Fighting Blindness achieve its position today. www.rpfightingblindness.org.uk
19
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 20
FUNDRAISING
2013 Cycle and Tandem RP Challenge Last year, a dedicated and hardy group of cycle and tandem riders embarked up on a stunning 356 mile, five day tour of northern England to raise funds for RP Fighting Blindness. David Head, RPFB's Chief Executive joined Roger Green, Ted Dwyer, his son Matt, Steve Bateman, Peter Allen and Alan Staniforth on the ride to raise funds for the charity.
Starting and finishing in the historic cathedral city of Coventry, the team travelled through several iconic cities and towns as they worked their way up as far north as Shipley and back. The route, which certainly was quite challenging in parts, also took in beauty spots such as Sherwood Forest and the Aire Valley. The group mainly cycled on traffic free routes and much of the cycling was along old railway lines and beautiful canal towpaths. The team weren’t alone however, and were accompanied by a support vehicle, driven by RPFB's
20
The RP Helpline 0845 123 2354
Communications Officer Tom O'Neill, which carried the team’s luggage, spare parts for the bikes and often went ahead to arrange food and rest stops. The tandem teams were made of one sighted and one partially
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 21
FUNDRAISING
sighted member, with David Head in the lead, riding solo and navigating on a bicycle. The challenge ended with a well-deserved celebration lunch, with several of the riders' families coming to cheer them into Coventry. A welcome glass of champagne was offered and everyone had a chance to relax properly for the first time in days!
Quite an achievement we’re sure you’ll agree!
The event proved a great success and much fun was had by all, despite the occasional puncture and some very heavy inclines! The final total raised is now calculated at just under £16,000 through sponsorship and matched giving.
If you would like to register your interest in taking part in future RPFB cycling events, or perhaps have a suggestion for future ones, please contact Michelle Carter on michelle@rpfightingblindness.org.uk or call on 01280 821334
We want to thank those who took part for their fantastic efforts and those who so generously sponsored them. We look forward to holding future tandem and cycling events to raise funds for RP Fighting Blindness!
Short Story Competition Last year RP Fighting Blindness launched the RPFB Short Story Competition. There’s a story in many of us and this was an opportunity to tell yours. We were especially interested in story-telling from people with RP and others affected by the condition such as families. You'll be excited to hear that we are extending the original competition into this year, with a final winner being announced at the RP Fighting Blindness Annual Conference on the 21st of June! The prize will be an award and £100 worth of book tokens! Please visit the Short Story Competition page on our website for eligibility criteria and closing dates: www.rpfightingblindness.org.uk/shortstory www.rpfightingblindness.org.uk
21
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 22
CASE STUDY
Seema Flower Business Woman, RP’er and Force to be Reckoned With! Last year Hannah Hickman, RPFB’s Project Fundraiser, Michelle Carter, our Events Coordinator and Thomas O’Neill, our Communications Officer attended a fundraising evening for the charity just off Oxford Street. This glossy event was held at ColourNation, a top London hair salon specialising in hair colour, cutting edge styling, hair loss solutions and technical treatments with a celebrity client list, owned by RP Fighting Blindness member Seema Flower. the press were also in attendance, along with bloggers and internet writers.
Seema Flower (second from left) with Thomas O’Neill, Hannah Hickman and Michelle Carter of RPFB, at her recent successful fundraising evening at her top London hair salon ColourNation.
Seema has RP herself and personally hosted the event which included a luxury raffle and hair treatment demonstrations. A large number of people came, including James Farrar, the Hollyoaks actor who ran the London Marathon for us last year. Several members of 22
The RP Helpline 0845 123 2354
Seema’s team in the salon provided her with great support and generously gave their time to help and style guests’ hair. The raffle proved hugely popular, with some brilliant prizes including beauty hampers, hair products, makeovers and very impressive fruit baskets! This event was held by Seema for two reasons - she obviously wanted to help raise funds for the charity, but also wanted to raise awareness of our work and of RP generally. A warm, friendly and extremely personable woman, Seema looked at home during event, mingling with her guests and encouraging people to dig deep to support our work.
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 23
CASE STUDY Seema, 45, was diagnosed with RP at the age of 9 and is now registered blind. She is responsible for the smooth running of ColourNation and welfare of her team of dedicated staff. Although not trained in hairdressing herself, Seema has a great sense of style and has always enjoyed being pampered in cutting edge salons offering a high standard of customer service. In fact on honeymoon before she founded the salon she stayed at the seven star Burj Al Arab hotel in Dubai, and the service experienced there inspired her ethos. Her brand of easy glamour challenges any preconceptions of partially sighted women as being disinterested in their appearance. At 21, Seema studied for a combined degree in business studies and computing at what is now London Metropolitan University, going on to qualify and work as a Careers Advisor and then work for the RNIB for seven years spending some time in the role of Student Advisor. All the while her sight was deteriorating, despite the fact that there was nothing in her family history to indicate that this would be her fate. Seema is now the Managing
Seema Flower and the team at ColourNation.
Director of her own successful company and has a staff of 12, including a manager who oversees the shop floor. She employs a support worker who assists with reading emails, and her mobile phone and computer have speech packages. She uses a white cane when walking. On top of running her successful business she has a family as well; supportive husband Andrew and her daughter India. Seema told us, when people ask her how she can run her salon having RP, she replies ‘Richard Branson doesn't fly his planes, so why can't I run a hair salon?’ This forward thinking positive attitude sums Seema up; as well as finding time to support our charity, she’s a successful independent business woman and a true inspiration. www.rpfightingblindness.org.uk
23
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 24
OBITUARIES Lynda Cantor MBE Hon. President and founder of RP Fighting Blindness, was greatly saddened recently to learn of the deaths of two key supporters of the charity. She shared some memories of these inspirational people who, helped shaped the organisation as it is today.
Hilary Strutt
friends, a big feature was our renowned shopping expeditions, When I lost my which left us both broke but very capacity for happy. Another of Hilary’s talents reading print, it was that she was an accomplished became clear that I pianist and an enthusiastic music needed a personal lover; I was fortunate enough to go to reader who would many concerts with Hilary and her deal with the husband, Geoff. When the new private and Milton Keynes theatre opened, we confidential paperwork for the were regular attendees. Since 1997 charity. In 1992, I contacted the Hilary escorted and guided me on local blind society for help and this numerous occasions to the London coincided with Hilary offering her meetings and functions connected services to assist a blind person. with the charity, in this country and Hilary came to see me and abroad, including Canada and explained that, as she was a Holland. pharmacist, she would be able to Over the years, Hilary continued to interpret all the medical record the charity’s Trusteeship terminology in our grant paperwork and also undertook the applications, reports, and other enormous task of reading my book paperwork. She also had close experience of RP, as her cousin was onto CD. It is absolutely impossible to convey the enormous contribution an RP patient. Hilary explained Hilary made to the charity’s that, as she suffered from Crohns development. From my own point of Disease, if she had a bad attack, view, Hilary’s loss is immeasurable then she wouldn’t be able to and I will miss her more than I can guarantee her commitment. This express. Our thoughts and prayers didn’t happen, for many years. In are with Geoff and Hilary’s sister, fact, Hilary’s commitment to me Rosemary and their families. increased and we became close
24
Office Telephone 01280 821334
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 25
OBITUARIES Helena Richardson
was our very first branch, known for It was with great sadness that I many years as the learnt of the death of Helena Kent Branch. In the Richardson. Helena was a longearly days, Helena standing member of the charity and and Joe organised was married to Joe Richardson and many fundraising mother to Christine and Julie. Joe activities, including and Helena had already formed a hilarious “wildgroup of RP patients in the Kent west dances” where people dressed area, when I was interviewed in the in costume and really let their hair early 1970s on the BBC radio down. Judith and John Marshall will programme for the visually remember these events, in the days handicapped, “In Touch”, when we were all able to participate. advertising the fact that I was Helena supported Joe in running the forming a charity for people with Kent Branch, as well as continuing RP. Joe and Helena immediately her caring role in looking after her contacted me, as their younger daughters, especially Julie, who daughter, Julie, had a particularly severe form of RP resulting in both needed full-time care. I always deafness and blindness, with other admired Helena’s quiet fortitude throughout her life, even after associated disorders. Joe came to see me to discuss how we could losing Joe in 2000 and Julie in 2003. amalgamate their group with our Helena will be sadly missed by all newly formed charity. The result those who knew her. Sadly, another longstanding member, Les Anderson passed away last year and his wife Anne submitted the following to us; Les Anderson, former Chair of the now closed Grampian Branch passed away on 30 October 2013. Les was Chair for 20 years and without his help the branch would have not existed, never mind being very successful for over 22 years. One particular highlight was holding a successful weekend Scottish conference when 180 people came to Aberdeen and raised quarter of a million pounds for research. Les was a kind man and helped many people accept their RP, young and old, and meet at our long time self-help group. He died suddenly with pneumonia. Many members may still remember him as a friendly, smiley but quiet man. www.rpfightingblindness.org.uk
25
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 26
FUNDRAISING
Launch of New Online Fundraising Tool We are delighted to announce the latest in our online fundraising tools to assist our members and supporters in their efforts on our behalf. By visiting the website http://rpfightingblindness.tribute funds.com/ users can set up online fundraising pages (in the forms of named funds), the details of which can then be circulated to family members, friends and colleagues in order to encourage them to raise funds for the charity. It’s a very positive, simple and secure way to introduce a personal story behind fundraising for RP Fighting Blindness. There are three different types of fund: • A named RP Research Fund is an opportunity to raise funds for medical research, perhaps in the name of a loved one who is affected, or on behalf of a family. A fund can also be named for a fundraising group, a company or a local community group • A named RP Gift Fund operates in a similar way, but money donated is not restricted to medical research. This allows the Trustees of the charity to allocate donations to other work, such as the provision of Information and Support services for people affected by sight loss as a result of RP • An RP Tribute Fund is a lasting memorial for someone who has passed away. This type of fund allows family and friends to remember him or her with gifts to the charity in future and record their tributes as they do so 26
The RP Helpline 0845 123 2354
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 27
FUNDRAISING All three fund types give the opportunity to donate directly, as well as adding to the fund by taking part in fundraising events or raising funds with a family occasion. Each fund type also gives the opportunity to make a difference with a simple £10 donation: • Buys a virtual microscope for an RP Research Fund • Buys a virtual bouquet for an RP Gift Fund • Buys a virtual in memory candle for an RP Tribute Fund For further information on setting up a fund, please call Julie Child at the office or email Julie@rpfightingblindness.org.uk
The Isle of Wight Group RP Research Fund The Isle of Wight Group, formed by Colin and Linda McArthur, was set up to fundraise for the charity back in 2006. The group itself has raised tens of thousands of pounds with activities including walking around and across the beautiful Isle of Wight, quizzes, open gardens and concerts. In addition, Colin, who has RP himself, has undertaken several stunts including riding a motorcycle on a speedway track, flying a plane, piloting one of Wightlink’s catamarans and piloting the Bembridge lifeboat. When they first heard about the new fundraising portal, Colin and Linda jumped at the chance for the group to take part. As Colin says, “Having an online fund of
this type enables us to keep a running track of all the money that we have raised for the charity over the last seven years. In addition, it provides our local supporters an at-a-glance snapshot of our fundraising, as well as giving them ownership of the fantastic work they do for us. It enables us to detail how individual supporters taking part in events contribute to our fundraising. Most importantly, the money raised for the Isle of Wight Group RP Research Fund has come from the people of the Isle of Wight and it’s great for us to acknowledge their support. After all, we couldn’t do it without them.”
email: info@rpfightingblindness.org.uk
27
96512 RP FB Spring 150 Newsletter R03_Layout 1 10/03/2014 09:42 Page 28