3 March 2010
Photographic work by man paralysed by Duchenne Muscular Dystrophy chosen for Exhibition at Parliament
Entry from Action Duchenne’s Life thru a Lens project is commissioned for exhibition by The Office for Disability Issues to mark 40th Anniversary.
An entry from the recent Action Duchenne Photography competition, “Life thru a Lens” has been commissioned for an exhibition at Parliament to mark the 40th Anniversary of the Chronically Sick and Disabled Persons Act. The black and white photograph of tracks in the sand was taken by photographer, Chris Winstanley, 27, from Formby near Liverpool, who is living with Duchenne Muscular Dystrophy, the severest form of the condition. The exhibition, which is being organised by the Office for Disability Issues (ODI), will take place in the Upper Waiting Hall of Parliament, a private members area, during 1 – 5 March 2010. The ODI will also be publishing an exhibition catalogue.
Chris Winstanley will be attending the exhibition’s opening ceremony held by Jonathan Shaw, Minister for Disabled People, on 1st March, along with other exhibitors, Ministers and invited guests. The ODI also plans to display the exhibition pieces in Minister’s offices, at ODI events, in the lobbies of government buildings and on the ODI website.
A Liverpool FC supporter, Chris submitted his original entry to the “Life thru a Lens” competition, Action Duchenne’s Genius Project funded by V, the National Youth Volunteering Organisation. The project aimed to show what living with Duchenne is like, told in photographs by those whose lives are directly affected. Since his success, Chris is now concentrating on furthering his photography work. All images from the ‘Life thru a Lens’ project will be on display at an exhibition at the International Centre for Life in Newcastle, from 11 March to June 2010
Chris Winstanley commented; “I enjoyed getting involved in the Life thru a Lens project and am delighted that my work was selected for this exhibition. As well as aiming to show the world what it is like to live with Duchenne, we are also aiming to raise awareness for this little known condition. It is sometimes difficult to feel included in society when you are in a wheelchair, but projects like this really help to bring disabled people into the community.”
Minister for Disabled People Jonathan Shaw said: "This exhibition not only marks the anniversary of the first piece of legislation to recognise the rights of disabled people but it also celebrates the views, experiences and talents of disabled people in the UK today. I am very much looking forward to meeting Chris and viewing his photograph as well as the other works on display at the exhibition.
"Over the past 40 years progress has been made to to improve the lives of disabled people and their families but as a government we are determined to realise our vision that, by 2025, disabled people will enjoy the same opportunities and choices as non-disabled people, and be respected and included as equal members of society.”
Duchenne Muscular Dystrophy affects 1 in 3,500 male births, affects 2,500 people in the UK and 40,000 globally. Duchenne is a muscle wasting disease that affects boys and very occasionally girls. Boys with Duchenne are usually in a wheelchair by age 10 and often don’t survive beyond late teens or early twenties. Their muscles gradually weaken and waste away affecting every muscle in the body including the heart and the diaphragm which operates the lungs. In Denmark young men with Duchenne live much longer, often into their 30s and 40s, due to the better, multi-disciplinary medical care provided. Action Duchenne is lobbying the UK government to provide a similar standard of care to boys and young men in the UK.
Nick Catlin, CEO of Action Duchenne said, “Chris’ entry stands out on two accounts. It is an artistic, atmospheric picture of the landscape, yet it also has a moving poignancy with the simplicity of the unexpected tracks in the foreground. It brings the viewer into the real world of the Duchenne patient who lives life to the full, despite increasing limitations on mobility and health. We hope that this will raise the profile of a disease that takes the life of our young boys at a tragically early age and help us to gain support in our fundraising to research for treatments for this currently incurable illness.”
Action Duchenne’s Life Thru A Lens Exhibition (http://www.lifethrualens.org/press.html ) will be on display at the Bioscience Centre, International Centre for Life, Times Square, Scotswood Road, Newcastle Upon Tyne, NE1 4EP. The exhibition opens on 11th March 2010 between 5pm – 7pm with a drinks reception to launch the exhibition. Visitors to the exhibition may buy prints with monies raised going to Action Duchenne. The exhibition will remain on display until June 2010 with the kind permission of Dr Karen Rafferty and Dr Kate Bushby from the Centre for Life. Dr Kate Bushby is a coordinator for the European neuromuscular diseases network, TREAT-NMD.
Notes to Editors:
About Action Duchenne
Action Duchenne (formally Parent Project UK) was set up by Duchenne families in 2001 to promote new research for a cure for Duchenne. The charity has a strong record in funding research and has to date funded 8 major projects costing over £1m and has lead the £1.6m DoH funding of the MDEX project. These projects have enabled much needed early work to be completed on exon skipping and other therapeutic approaches.
Action Duchenne holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists.
In 2005 Action Duchenne launched the Duchenne Patient Registry, the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials. www.dmdregistry.org
In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals.
For more information please visit: www.actionduchenne.org
CEO, Action Duchenne
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500
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