Retinal Awareness Group (RAG) Meeting Reminder
Total Page：16
File Type：pdf, Size：1020Kb
Look Forward Issue 150 April 2014
Includes Retinal Awareness Group (RAG) Meeting Reminder
RPFB Annual Conference
The Retina International World Congress of Ophthalmology
Gene Therapy Trial Results
Scientists ‘Print’ New Eye Cells
Gene Team Update
Tandem Challenge Success
Online Giving
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!
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 and patient information days. Excitingly, the Retina International 2014 World Congress of Ophthalmology is being held in Paris this year and several medical research 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.
Retinal Awareness Group (RAG) meeting reminder! The Retinal Awareness Group (RAG) is holding it’s 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 North- West 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.
The RP Conference 2014 As last year, the 2014 RP Conference is being held at the Pullman Hotel on Euston Road, London. 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 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!)
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 [email protected] or call on 01280 815900 to confirm the number of places required. Non-members and non-subscribers will be invoiced.
Preliminary Conference Programme 21 June 2014 (Morning) 09:00 Exhibition and registration open
09:55 Conference Welcome David Head, Chief Executive
10:00 Session 1: Speakers
Presentation: Inspiration Annalisa D’Innella, RP Patient and journalist
Presentation: A patient’s perspective, Speaker To Be Confirmed
10:50 Tea and Coffee Break (20 mins).With a chance to view the stands and chat
11:10 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 The Lynda Cantor (Founders) Award Short Story Competition Award
11:30 Session 3: Speaker Support for patients with RP Speaker To Be Confirmed
12:00 Lunch - Lunch is provided and the stands will remain open
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 restoration and preservation of sight Professor Eberhart Zrenner Chair-Professor of Ophthalmology Institute of Ophthalmic Research, University of Tuebingen Prospects for stem cells as a therapy for retinal degeneration Professor Majlinda Lako Professor of Stem Cell Science Institute of Genetic Medicine, Newcastle University
14:00 Session 5: RP Question Time
Chaired by Professor Paul Bishop An interactive session in the style of BBC Question Time.
Your chance to quiz a panel of four eminent researchers and clinicians. For the panel, our keynote speakers will be joined by: Professor John Marshall MBE Professor of Ophthalmology Institute of Ophthalmology and Moorfields Eye Hospital, UCL
Last panel member to be confirmed; most likely a clinician
15:00 Tea and Coffee Break (30 mins). With a chance to view the stands and chat
15:30 Chairman's Conference Address
Mr Don Grocott Chairman of the Board
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 non-members are welcome to attend but will not be entitled to speak or vote on any resolution.
16:45 Event close
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 are 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 Mr Michel Michaelides BSc MB BS MD FRCOphth FACS of Moorfields Eye Hospital and UCL Institute of Ophthalmology, or 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.
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.
Some sessions will be dedicated to particular conditions including RP, optic neuropathies and Usher syndrome. Delegates will also be offered tours of beautiful Paris in addition to the scientific programme.
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! In years gone by we collected used stamps from members and bulk- sold 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 to 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.
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 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).
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...”
One of the important aspects of the trial conducted at the University of Pennsylvania was that both types of photoreceptor cells in the retina were treated, while in previous work, only rods or cones were targeted. In order to restore vision, the researchers used a subretinal injection of normal Retinitis Pigmentosa GTPase Regulator (RPGR) gene, which is generally the faulty one in XLRP. In addition, a specific piece of genetic code, or “promotor,” was attached to the healthy RPGR gene ensuring it would only activate in the appropriate cells.
What was also notable was that the treatment appeared to restore cells in advanced cases, and there were indications of repaired connections 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.
The team at UCL Institute of Ophthalmology plan to use the technology and principles proven in these and other animal studies, and in clinical trials for other types of RP, in their proposed XLRP trial.
David Head, Chief Executive at RP Fighting Blindness, said “It is exciting to see the researchers we have been supporting preparing an increasing number of clinical trials. Also, it is fascinating to follow the threads of work from animal models to human studies. We are optimistic that as studies and trials for more forms of RP are developed progress will become faster, as the underlying technology is further developed and more extensively proven.” More information and contact details in respect of the UCL study is available online at tinyurl.com/xlrpstudy
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 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 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.”
The gene therapy approach developed by Professor MacLaren’s team uses a small, safe virus to carry the missing CHM gene into the light-sensing cells in the retina. In an operation, the patient’s retina is first detached and then the virus is injected underneath using a very fine needle.
The aim is for the CHM gene, once delivered into the cells of the retina, to start producing protein and stop the cells dying off. ‘If we were able to treat people early, get them in their teens or late childhood, we’d be getting the virus in before their vision is lost,’ explains Professor MacLaren. ‘If the treatment works, we would be able to prevent them from going blind.’
This is the first time a gene therapy for an eye condition has been tested in people with full 6/6 visual acuity. This suggests the approach has promise for treating people early on before too many cells in the retina have been lost. 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 retinitis pigmentosa and agerelated macular degeneration.
David Head, Chief Executive at RP Fighting Blindness said, “Prof MacLaren’s work is very significant, and at RP Fighting Blindness we are delighted to see such positive news emerging from Oxford. Gene therapy is a key line of RP research and, as we have suggested on many occasions, is very likely to result in viable treatment at the early stage of various retinal dystrophies, of which choroideremia is just one. I should point out that RP Fighting Blindness has not been funding this particular project - credit for that must go to Fight for Sight and others - but retinal dystrophy patients around the world should take an interest in the results and progress made and as the patient organisation representing people with RP in the UK we are certainly following this with great interest.”
Read more about this story on the RPFB website.
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.
The Cambridge University team responsible for the project say it paves the way for grow-your-own therapies for people with damage to the retina. More tests are needed before human trials can begin.
At the moment the results are preliminary and show that an inkjet-type printer can be used to “print” two types of cells from the retina of adult rats; ganglion cells and glial cells. The cells remained healthy and retained their ability to survive and grow in culture. Co-authors of the study Prof Keith Martin and Dr Barbara Lorber, from the John van Geest Centre for Brain Repair at the University of Cambridge, said: "Although our results are preliminary and much more work is still required, the aim is to develop this technology for use in retinal repair in the future."
They now plan to attempt to print using other types of retinal 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 future to create organised tissues for regeneration of the eye and restoration of sight. Blindness is commonly caused by degeneration of nerve cells in the eye. In recent years there has been substantial progress towards the development of new treatments involving cell transplantation."
Professor John Marshall, one of our longest serving trustees commented, “It would seem that the cells have survived the process of passing through the small aperture [during printing] and are viable. I'm not clear however that they will sustain the geometric matrix in which they are laid down in... It's an interesting paper but... the matrix laid down in the retina is hugely dependent upon innumerable chemical gradients laid down during embryogenesis. I do [however] think this will be far more useful for creating artificial corneas than artificial retinas.”
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.
The idea is simple enough – a regular, but not too frequent, meetings between the research team, the charity’s representatives, and several patients with an interest in the particular project work. What it has done is improve understanding and empathy all round and we intend to use the SLG model again in another big project being developed at the moment.
This meeting was as a project exploring the potential of pharmaceuticals to treat RP, specifically looking at the possibility of certain molecules (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 images produced now by the new technology used to see how the retina has developed or degenerated.
Meeting and talking to patients helps the researchers understand how important this is to our members and other patients, and makes it all very “real”. We also feel confident that the meetings help us all understand the way the team at UCL works, the problems they face, the issues around working with animals, and of course some of the science - albeit at a very basic level. This was the first of probably half a dozen meetings over the three years of the project and we are already looking forward to the next one. We will write more about this in future issues of Look Forward and keep you updated.
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.
This project is intended to translate the scientific advances made over recent years into clinical trials and potential treatments. The project is led by eminent researcher Professor Robin Ali who has built an outstanding team of scientists around him.
We had enjoyed great success last year, with an aim to raise £145,090 in 2013, with the actual amount raised coming in at £167,129! This was a brilliant result and the extra money generated last year is being put aside to be bolster the next phase of Gene Team funding, due to start shortly. We feel sure that 2014 will prove even more successful with the project gaining ground scientifically and garnering interest 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!” he commented. “We are making sustained progress in our ambition to start new gene therapy trials for both early onset and later onset forms of retinitis pigmentosa in the near future. We have made advances both in the laboratory and in our ability to characterise retinal structure and function in detail. The RPFB fundraising is at the heart of this endeavor. To realise our aims we need this to continue at the same impressive pace to thereby help accelerate progress.”
You can find out more about the Gene Team, the work we are funding and how you can donate to this fantastic project by visiting www.geneteam.org.uk.
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 2009- 2010.
The finding is important because for the first time in at least fifty years diabetic retinopathy has not been reported as the largest cause of blindness. The researchers ascribe this to improvements in screening and care for people with diabetes rather than a real increase in IRD numbers, though they do say that “…The progress made over the last decade in molecular genetics / diagnostics and the increasing avenues of research / clinical trials for IRD with widespread media coverage may plausibly have resulted in … increased clinic visits and thereby registration, without a 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 implants for these diseases. The UK government and charities have taken a leading role in developing therapies for these previously untreatable diseases, with the first person in the world treated with gene therapy for retinal disease here at the NIHR centre only a few years ago. This provides a great stimulus to encourage further patient support and research into all these exciting new treatment modalities, including the national rare disease initiatives, which give new hope to people with these conditions."
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!
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 ongoing project. If you have any random coins or notes floating around, please do send them in! Thanks for your support!
Please label your envelope: RP FCA PO Box 350 Buckingham MK18 1GZ
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 tinyurl.com/rpquestionnaire
For this questionnaire the team are interested in the views of both people with RP and people who support people with RP. Their ultimate aim is to provide help and advice on how to make everyday tasks easier to complete.
It is hoped that this research will increase independence and quality of life among people with RP.
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 following information: Ahoora Baranian (PhD student) Phone: 0845 196 2869 Email: [email protected] Dr Matthew Timmis, Dr Keziah Latham & Professor Shahina Pardhan
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 Avileson 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 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 [email protected] 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 send 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.
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 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 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!
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. Quite an achievement we’re sure you’ll agree!
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!
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 [email protected] or call on 01280 821334
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
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.
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 the press were also in attendance, along with bloggers and internet writers.
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 the event, mingling with her guests and encouraging people to dig deep to support our work.
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 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.
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 When I lost my capacity for reading print, it became clear that I needed a personal reader who would deal with the private and confidential paperwork for the charity. In 1992, I contacted the local blind society for help and this coincided with Hilary offering her services to assist a blind person.
Hilary came to see me and explained that, as she was a pharmacist, she would be able to interpret all the medical terminology in our grant applications, reports, and other paperwork. She also had close experience of RP, as her cousin was an RP patient. Hilary explained that, as she suffered from Crohns Disease, if she had a bad attack, then she wouldn’t be able to guarantee her commitment. This didn’t happen, for many years. In fact, Hilary’s commitment to me increased and we became close friends, a big feature was our renowned shopping expeditions, which left us both broke but very happy. Another of Hilary’s talents was that she was an accomplished pianist and an enthusiastic music lover; I was fortunate enough to go to many concerts with Hilary and her husband, Geoff. When the new Milton Keynes theatre opened, we were regular attendees. Since 1997 Hilary escorted and guided me on numerous occasions to the London meetings and functions connected with the charity, in this country and abroad, including Canada and Holland.
Over the years, Hilary continued to record the charity’s Trusteeship paperwork and also undertook the enormous task of reading my book onto CD. It is absolutely impossible to convey the enormous contribution Hilary made to the charity’s development. From my own point of view, Hilary’s loss is immeasurable and I will miss her more than I can express. Our thoughts and prayers are with Geoff and Hilary’s sister, Rosemary and their families.
Helena Richardson It was with great sadness that I learnt of the death of Helena Richardson. Helena was a longstanding member of the charity and was married to Joe Richardson and mother to Christine and Julie. Joe and Helena had already formed a group of RP patients in the Kent area, when I was interviewed in the early 1970s on the BBC radio programme for the visually impaired, “In Touch”, advertising the fact that I was forming a charity for people with RP. Joe and Helena immediately contacted me, as their younger daughter, Julie, had a particularly severe form of RP resulting in both deafness and blindness, with other associated disorders. Joe came to see me to discuss how we could amalgamate their group with our newly formed charity. The result was our very first branch, known for many years as the Kent Branch. In the early days, Helena and Joe organised many fundraising activities, including hilarious “wildwest dances” where people dressed in costume and really let their hair down. Judith and John Marshall will remember these events, in the days when we were all able to participate.
Helena supported Joe in running the Kent Branch, as well as continuing her caring role in looking after her daughters, especially Julie, who needed full-time care. I always admired Helena’s quiet fortitude throughout her life, even after losing Joe in 2000 and Julie in 2003. Helena will be sadly missed by all 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.
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.tributefunds.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 donatedis 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
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 [email protected]
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.”
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: [email protected] T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE