Summer 2011 Prevent Blindness America 211 West Wacker Drive, Suite 1700, Chicago, Illinois 60606
Newsletter
© 2011 Prevent Blindness America. All Rights Reserved
International research prize for Fight for Sight PhD student
Progress towards treating eye conditions An inherited (genetic) disorder is a conditionthat may be passed on from parents to children through their genes. For some,inherited eye conditions can mean little or no sight from a very young age. For others, theycan lead to a gradual reduction in sight. Thereis currently no cure for these conditions.Recent years have seen major advancesin our understanding of inherited retinaldiseases such as Leber’s congenital amourosis (LCA), retinitis pigmentosa (RP),choroideremia and Stargardt’s disease. Summer 2011 Newsletter
By investing in research we are able toidentify some of the genes responsible for these conditions, to identify patients withthe conditions and to develop and pioneernew treatments. Some of these are alreadyat or close to a stage where they are being\ trialled in patients. With your support we cancontinue to fund life-changing work like this.Turn to page 2 for examples of how a numberof Fight for Sight funded projects are takingreal steps to make a difference.
Fight for Sight funded PhD student DanielLipinski was awarded the Young Investigator’s Award in Visual Science at this year’s Asia-ARVO international conference in Singapore,the premier eye research meeting in Asia. This award recognises the contribution ofexceptional young scientists working in thefield of vision research.Daniel presented findings from his work at theNuffield Laboratory of Ophthalmology, part of the University of Oxford, where he is supervisedby Professor Robert MacLaren. His researchis looking at ways of preventing loss of conesin the retina which can cause sight loss. Thiscould lead to potential gene therapy treatmentsfor conditions like retinitis pigmentosa.He said: “The first year of my PhD has goneextremely well, and it is an honour to havereceived an international award for my work. Icannot thank Fight for Sight enough for givingme this opportunity.” With your support the charity is committed to encouraging young graduates like Daniel to take up and continue a career in ophthalmology and vision research. 1
Screening patients for retinal Disease Ongoing work funded by Fight for Sight, led by Professor Tony Moore, at the UCL Institute of Ophthalmology is looking to identify the genetic faults causing retinal diseases, including LCA. The project involves documenting the effects on retinal function and identifying patients who could benefit from gene therapy. This work could have a profound impact on childhood blindness. Working with Professor Moore, Dr Michel Michaelides is researching a gene therapy replacement for an inherited eye condition called achromatopsia, in which there is an absence of cone photoreceptor cells in the retina. It causes colour blindness, sensitivity to light and profound visual loss from infancy. This work is looking to identify people with the disease who still have some functioning cone photoreceptors and may be suitable for clinical trials planned for the near future. Dr Marko Nardini, from the UCL Institute of Ophthalmology has recently been awarded a grant to develop new methods for measuring retinal function in young children at risk of sight loss from inherited conditions such as RP. By accurately measuring changes in their vision, he hopes to better understand the link between these changes and the development of different inherited disorders. These tests will be used to measure the visual outcomes of new treatments such as gene replacement therapy for children with inherited retinal disorders.
Developing therapies Developments in treatments for to restore Sight choroideremia and Stargardt’s disease Dr Jane Sowden and her colleagues at the UCL Institute of Child Health have made great progress towards the development of a new stem cell treatment for inheritedretinal disease. They have now successfully transplanted photoreceptor cells into a modelof LCA, where these cells are defective. Theyare now working to assess how much visioncan be improved. It is hoped this approachwill lead to clinical trials in the near future. 2
Professor Robert MacLaren at the Universityof Oxford is planning to start the first genereplacement therapy trial for choroideremiaand with funding from Fight for Sight he iscontinuing his research to develop a genereplacement therapy for Stargardt’s disease.Both choroideremia and Stargardt’s diseaseare inherited retinal conditions causingprogressive loss of vision. Summer 2011 Newsletter
Better care for inherited retinal disease
Age-related macular degeneration
Work led by Professor Graeme Black atthe University of Manchester is looking to develop an effective model of care provision for families with genetic eye conditions. This will cover genetic counseling and testing.
In AMD, the macula - a small part of the retina at the back of the eye starts to degenerate with age affecting our ability to see detail. It is the leading cause of sight loss in people aged over 60 in the UK. Dr Heping Xu and Dr Mei Chen from Queen’s University Belfast are investigating links between the body’s immune system and AMD. They are looking to gain a better understanding of the role of white blood cells and complement proteins in the development of AMD, which is crucial for developing new treatments to improve the immune system’s response to the condition.
Success in gene therapy trials Steven from Bolton received treatment as part of the first gene therapy clinical trial for retinal disease at Moorfields Eye Hospital. Only patients with a rare genetic fault causing their retinal disease were suitable for the trial and Steven and other suitable patients were identified with funding from Fight for Sight. Following this groundbreaking treatment, Steven benefited from an improvement in his night vision and was able to walk around in the dark in confidence, which he hadn’t been able to do so previously.
Summer 2011 Newsletter
Research news Tackling the leading causes of sight loss With your support, Fight for Sight has committed new funding for research into cataract, glaucoma and age-related macular degeneration, the most common causes of sight loss according to the World Health Organisation.
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Supporting babies and young children
Improving the success of cataract surgery PCO (Posterior Capsule Opacification) or ‘after-cataract’ is a common complication of cataract surgery. The operation is usually reliable but problems can arise when cells that remain rapidly divide and cover the surface of the new artificial lens, causing further problems with vision. Professor Roy Quinlan from Durham University is working with Dr Noemi Lois from Aberdeen Royal Infirmary to examine why these complications occur. This exciting work could not only prevent complications in the future, but has the potential to enable researchers to ‘grow’ new, living lenses, which could be used in cataract surgery in the future.
Preventing optic nerve damage in glaucoma
A project taking place at Great Ormond Street Hospital and led by Dr Naomi Dale and Dr Alison Salt is studying the early development and support of babies with a visual impairment. The findings are likely to increase our understanding about the best ways to give them the vital support they need in the precious early years of life. The team are keen to recruit families of visually impaired babies aged between 0-15 months from across England and Wales. To find out more contact Dr Elena Sakkalou or Dr Michelle O’Reilly on 020 7599 4124. The project is a partnership between Fight for Sight, RNIB, Great Ormond Street Hospital Children’s Charity and the Developmental Vision team at Great Ormond Street Hospital/ University College London and the Institute of Child Health. Support from trusts and companies
Trust support for Dundee project
The R S MacDonald Charitable Trust has donated £20,000 towards Professor Irwin McLean’s research at the University of Dundee. The Increased pressure in the eye is a major risk factor for glaucoma and can research will focus on ways to treat lead to permanent damage to the optic nerve which results in sight loss. inherited eye diseases such as corDr Craig Boote and Professor Keith Meek from Cardiff University’s School neal dystrophies through gene of Optometry and Vision Sciences have been awarded a grant to study the therapy. The Trust has donated over structure and properties of the sclera £250,000 to Fight for Sight over the (the white of the eye, which supports the optic nerve) to identify changes last nine years. Visit www.fightforthat may lead to optic nerve damage. These findings will be important in sight.org.uk for information on the the development of new treatments. charity’s research programme. 4 Summer 2011 Newsletter
Glasgow company offers visionary support Employees of Glasgowbased eye care service Vision Care at Home have chosen to support Fight for Sight as their Charity of the Year. Gary Maitles, Business Development Manager at Vision Care at Home, said today: “We are all very excited to have Fight for Sight as our Charity of the Year – as well as raising substantial funds we hope that we can raise the profile of their incredible work.”
Rosetrees Trust awards grant The Rosetrees Trust has agreed to support research into the use of lasers to treat age-related macular degeneration led by Professor Glen Jeffery at the UCL Institute of Ophthalmology. The Trust has donated nearly £200,000 to fund eye research projects at Fight for Sight since 1996.
Fundraising news
Carrots Nightwalk – see London in the dark! Join Fight for Sight for a 15-mile sponsored walk at night in London on Friday 23 September to raise funds for eye research. This brand new event will start at the iconic BFI IMAX on London’s South Bank and take in some of the city’s most spectacular night-time sights. Call 0800 690 6140 for more information or go online at www.fightforsight.org. uk/carrots. Summer 2011 Newsletter
Dickens view wins photo comp! We received some fantastic entries for our 2011 My View of London photography competition. Nick Gommon from London was awarded first prize from more than 1,100 entries with his atmospheric shot of the Thames (pictured right). He won a two-night stay at the Park Plaza Westminster Bridge London hotel and a digital SLR camera kindly donated by Sony.
Fight for Sight promotes good eye health National Eye Health Week in June saw eye care charities, organisations and health professionals from across the UK come together to promote the importance of good eye health and the need for regular sight tests. During the week Fight for Sight unveiled its new and exciting flagship event, the Carrots Nightwalk. See page 5 for more information. 5
Cake sales raise vital funds! Charles Medhurst (pictured) baked some delicious cakes and invited his friends and neighbours in Greenwich to sample the delights, raising £342. Charles has supported the charity for over 20 years through coffee mornings as
well as running the London Marathon! Events like these are so important in helping fund vital eye research. We would love to hear from you if you would like to support our work by organising your own event.
Quiz and chips night!
Mrs Rosemary Rushbrook (pictured) and friends will be organising another ‘quiz and chips’ night in aid of Fight for Sight. The night will be held at the Sprowston Senior Citizens’ Club, Norwich on 8 October. Call Rosemary on 01603 419 334 for more information. If you would like to be added to the mailing list for other events in Norfolk email Jane Ridley at janeridley@dsl.pipex.com.
Guernsey group cycle for sight!
The Guernsey Bicycle Group hosted a Bike-athon in aid of Fight for Sight in June. The event, organised by Francis Paul (pictured) and friends, involved nine sponsored teams taking part in the cycling challenge at the Delancey Park cycle track and raised over £2,500. Francis was motivated to raise funds as his wife’s 19-year-old niece was recently registered blind.
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Fundraising news
Sisters cycle at night for sight! Four sisters, Emily, Jessica, Katy and Lucy Allen completed Nightrider 2011 for Fight for Sight – a 100km cycle ride around London at night. They raised more than £850 for eye research. Their grandmother suffers from macular disease, so supporting eye research is very close to their hearts. Lucy said: “Our Gran’s sight loss has recently gotten a lot worse and she is very nearly completely blind. We are an incredibly close family so not only has it changed her life, it affects all of us. We do what we can to help each other and this was our way of making a difference.” If you would like to to take part in a sponsored event visit www. fightforsight.org.uk or call Jo Bell on 020 7264 3900. Summer 2011 Newsletter
Teeing off for sight! Football fundraiser supports Stargardt’s research
18 teams competed in a football tournament in June organised by Izzy Cameron and her family in aid of Fight for Sight. Three years ago, Izzy’s eleven-year-old stepson Robbie was diagnosed with Stargardt’s disease - an inherited eye condition. There is currently no cure for Stargardt’s disease. As mentioned on page 2, Fight for Sight is supporting Professor Robert MacLaren at the University of Oxford to develop a new gene therapy treatment which could replace the defective genes which cause the condition with healthy ones. This year Izzy and her family have organised a series of fundraising events, including the football tournament, to support this research which could one day help Robbie and others affected by Stargardt’s. Since he was diagnosed, Robbie has lost his central vision and has to rely entirely on his peripheral vision. Izzy said: “The way Robbie has adapted to the changes in his vision is fantastic but because there is no way to treat the disease, it is likely to have a significant impact on what he is able to do as he gets older. It is so important to support research looking at potential treatments for Stargardt’s and Robbie’s friends, family and school have all been incredibly Summer 2011 Newsletter
The Fight for Sight Warwickshire Committee organised their annual golf day in July raising over £12,000. The Committee welcomed golfers from around the country to take part in their golfing fundraiser at Stoneleigh Deer Park Golf Club. After completing an 18-hole course, the
golfers and members of the Committee enjoyed dinner in the Club House followed by a tombola and fundraising auction. The winners of the day’s golfing challenges were also presented with their prizes by Clive Stone (far left) and Francesca Marenghi.
Choroideremia Committee raises more than £200,000 Choroideremia is a rare inherited eye disorder that causes progressive sight loss. The Tommy Salisbury Choroideremia Committee was set up by the family and friends of Tommy Salisbury who is affected by the condition. Funds raised are supporting the research being carried out by Professor Miguel Seabra at Imperial Col-
lege London investigating the use of gene therapy in treating choroideremia. The Committee has now raised more than £200,000 for research through many fantastic fundraising events. Recently a team took on the Yorkshire Three Peaks Challenge to raise funds and the Committee held their annual golf day at Shooters Hill Golf Club. (pictured right). 7
e-news
Every two months the Fight for Sight e-newsletter brings our supporters information about research, up and coming events and fundraising activities. To sign up visit www. fightforsight.org.uk or email darren@fightforsight.org.uk.
Make a regular donation
Making a donation by Direct Debit is one way to regularly support Fight for Sight, enabling us to plan more effectively for long-term projects. It is also a very efficient way of supporting our work, cutting down on administration and enabling more money to be spent on sightsaving research. If you would like to set up a regular gift please contact Gemma Leary on 020 7264 3900 or gemma@fightforsight.org.uk.
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Leaving a gift for the future Leaving a gift in your will is a meaningful way to support eye research beyond your lifetime. Gifts in wills have helped to enable a number of Fight for Sight’s achievements to date. These include: • establishing the UK Corneal Transplant Service enabling over 48,000 transplants • providing £1 million for research at the children’s eye centre at Moorfields Eye Hospital, London • helping to fund the world’s first gene therapy clinical trial for inherited blindness. With your gift we can make an even bigger difference to people’s lives. If you would like information on leaving a gift in your will, please contact Annu Mayor in confidence on 020 7264 3900 or annu@fightforsight.org.uk.
Summer 2011 Newsletter