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A text-only version of the Spring 2005 Newsletter ISSUE NO 8
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Creator of Dolly will clone human embryos The Human Fertilisation and Embryology Authority (HFEA) announced, on 8 February, that it has granted a licence allowing the use of embryonic stem cells to conduct research into the causes of Motor Neurone Disease. Prof Ian Wilmut, of The Roslin Institute in Edinburgh, and Prof Chris Shaw, from the Department of Neurology at King's College Hospital in London, have been granted the licence to clone human embryos for use in researching MND. The cloning technology developed by Dr Brian Dickie, Director of Research at the MND Association, said: “Today's announcement means we are a step closer to medical research with the potential to revolutionise the future treatment of MND. “All along, the Association has recognised that the area of embryonic stem cell research and therapeutic cloning raises moral, ethical and religious issues, and it's important that these are considered and debated.” The next step is for Prof Wilmut and For further information, contact Sarah Fitzgerald, Head of PR and Media, on 01604 611840 or 07831 349382, or email sarah.fitzgerald@mndassociation.org Carers
Lunch, Getting a break as a carer is very difficult. However, The Branch gave this opportunity to past and present carers by providing lunch at the Calf’s Head’, Worston, Nr Clitheroe.
The event
took place on Monday This is another way we are trying to help those caring for loved ones affected by the disease. AGM Wednesday, 9 March 1.30pm for 2.0pm Galloway’s House (Society for the Blind) Howick Park Avenue Howick, Penwortham
Diary Dates
1.30 for 2.0pm AGM Wed, 9 March Galloway’s House Howick Penwortham
19 March MND Collection Manchester United
Mon, 18 April 7.30pm Open Meeting Oakhill College Whalley
MND Awareness Week 18 – 26 June, 2005 eMeetingsOpen meetings are held regularly for anyone with an interest in MND. They are a time for meeting and socialising with those living with MND and those dedicated to helping and supporting them.These meetings are very informal and are an opportunity to chat and exchange information and ideas over a cup of tea or coffee.For details tel:
YEAR OF THE VOLUNTEER
This year the Government has
launched To mark ‘The Year of the Volunteer', the MND Association is appealing for people to take up one of the most challenging and rewarding volunteering opportunities around. Association Visitors are specially trained volunteers who provide friendship and support to people affected by Motor Neurone Disease. There are currently more than 300 Visitors, but more are needed to meet growing demand for this unique support. Glynis Atherton, Director of Regional Support at the MND Association, said: “People with MND tell the Association that they feel isolated and alone, despite the fact they are often inundated by visits from a whole range of professionals. “Association Visitors provide a listening ear to the person with MND and their carer, and, working alongside the Association's paid staff, can act as advocates for them. It is a demanding but very rewarding opportunity for anyone who wants to build their portfolio or use their professional skills in retirement.” The Association provides a comprehensive training programme for Visitors, which recently won a National Training Award. The programme includes an introductory day, a two-day residential, an eight-week period of experiential learning and a final follow-up day.
For more
information on volunteering with the MND Association,
For further
information on ‘The Year of the Volunteer'
or the
ARE YOU - a good listener? - caring? - friendly and supportive? With the above skills have you considered becoming an Association Visitor? Visitors come from all walks of life with all kinds of experience. Many of those who provide this supporting, personally rewarding role have had direct personal experience of the disease. But increasingly, more Visitors are getting involved independently and bring a wealth of skills and experience with them. Visitors offer caring, practical support to people living with Motor Neurone Disease (MND) and their families. They work as part of a local team befriending people with MND by visiting them and their carers at home or keeping in touch by telephone, providing a valuable link between people affected by the disease, the MND Association and other sources of help. If you would like to know any more details of what is involved, please give Nigel a ring on 01254 247393 For sale Ultralite Scooter (battery powered) This will fit into the boot of a car. Cost £1800 new and is only 18 months old. In excellent condition, hardly used. Any reasonable offer considered with all the proceeds going to the MND Central and East Lancs branch. Telephone Ann 01282 841573
IMPORTANT: If you are affected by MND and you require support or information, please ring any of the numbers below:
National Helpline Number 08457 62 62 62 Calls are charged at local rates from anywhere in the UK.
Newsletter The next edition will be out in June 2005, so please let me have your articles by 31 May 2005. I’m always looking for contributions for the newsletter, be it photographs, personal experiences of living with MND (e.g. a holiday or events you have been involved in) etc. Send your articles to:- email centeastlancs@mndassociation.org, or speak to one of our Branch Contacts.
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Meet our new VDC My name is Karen Hickmore and I am the new Volunteer Development Co-ordinator for the Northwest. I live in Widnes with husband Mark and 3 children, Emma who is almost 17, and Oliver and James who are 14. I have worked with volunteers for most of my working with life and spent 2½ years as the Volunteer Co-ordinator of a local Hospice before moving to my last job with the British Lung Foundation. Whilst at the BLF I worked with their network of support and fundraising groups across the North West, supporting and assisting existing groups and founding and developing new ones. In my spare time I enjoy going to the theatre and concerts and going to the gym. I have also been known to indulge in the odd spot of shopping, especially when encouraged by my teenage daughter. The MND Association is very close to my heart as my husband’s grandmother had MND and my mother-in-law is currently an Association Visitor in Lincolnshire. I am very much looking forward to working with the Branches of the MND Association in the North West and to meeting many of you as soon as possible.
19 March 2005 Go on treat yourself, have a day out in Manchester! Would you please consider helping the branch as part of a group of people from the MND Association collecting as National Office has offered us the chance to help collect funds at Manchester United’s home game All that we collect will benefit our Branch. Manchester United usually have around 67,000 football fans and a typical collection of £19,000. Please can you spare two hours collecting from 1pm to 3pm? Contact Nigel 01254 247393 Soccer link to MND A RIGOROUS study in Italy has confirmed claims that professional soccer players have a higher than normal risk of developing a type of motor neurone disease, also known as amyotrophic lateral sclerosis, the reason for this remains a mystery. Adriano Chiò's team at the University of Turin surveyed the medical records of 7000 professional footballers who played in Italy's first or second division between 1970 and 2001. Based on the normal incidence of the disease and the players' ages, the researchers calculated that there should have been 0.8 cases of ALS in this group, instead there were five. The study was prompted by what the Italian press dubbed "the motor neurone mystery". Article by
Laura Spinney Where Eagles Dare!MARIA EAGLES, the Minister for the Disabled took her life in her hands when she volunteered to go Chorley Council for Voluntary Services and meet with people with and groups representing people with disabilities. Little did she know that she would come face to face with Red Ruth AKA Militant McLoughlin who would be dressed in her most power dressing, ‘you won’t be able to ignore me!’ red suit. After a preliminary talk when Ms Eagles described her role with the Dept for Work and Pensions (DWP) and her wider remit of being the minister for disabled people, questions and issues were asked of the audience. Ruth quickly raised her hand and described Motor Neurone Disease in stark terms, detailing the average time from diagnosis to death. Ruth then gave examples of people with MND in Lancashire on waiting lists for electronically powered indoor-outdoor wheelchairs (EPIOCS), which exceed 4 years. Ms Eagles was visibly shocked to hear of this situation and whilst making no promises, she would look into the situation. She acknowledged that it was not acceptable and they needed to do better. I emphasised that provision was not equitable and that many people with MND wanted to get on with the business of living with MND, which may in fact mean returning to work but can not because of the lack of an EPIOC. Ms Eagles acknowledged that there needed to be a more cohesive approach to provision of services and described how she had been told that if somebody wanted a wheelchair they should go to the DWP and not the wheelchair service because they would be bought a brand new one of their choice rather than be given one from a limited selection. The only route for this to be possible is through the access to work programme and so would only be relevant to a small number of people with MND. Ruth McLoughlin, reporting from Lancashire
Fancy a challenge in 2005?
To find out more call the fundraising team on 01604 611866/833, email fundraising@mndassociation.org
Survey of Views
and Experiences As you may be aware the Association is focused on improving the quality of service provision for people living with MND. This survey is the largest we have undertaken, as we want to ensure that we have a real sense of the issues you are facing and therefore the areas we need to target in terms of education and influencing. The basis of this survey is the Standards of Care, produced by the Association, in which we set out what we believe should be available to people living with MND from the statutory services. I appreciate that there are a large number of questions, but hope you will find it easy to complete. You may like to complete the survey in stages or ask someone to help you. Our ultimate goal is to enhance the quality of care available to people living with MND and their carers. The information you give us will enable us to plan the development of Association activity and to influence the provision of services at both a local and national level. You can fill in the Survey online, or download the Survey and return it by post. When the Survey is completed, please address your envelope to: Private and Confidential,
FAO Care
Development If you need help or further information, please email care@mndassociation.org or ring 01604 611 870 Our thanks to… Chhaya Riley and her family and friends who organised a fundraising concert and raised the magnificent sum of £680 Eddie Harrison who participated in the Coniston run and raised the wonderful sum of £600. Contacts:- Ruth McLoughlin is the Association's Regional Care Adviser (RCA) who has detailed knowledge of the care and management of Motor Neurone Disease. Working very closely with local statutory services and community care providers she provides support and advice to people with MND and their families. Karen Hickmore is the local Volunteer Development Co-ordinator (VDC) who is regionally based to provide advice and support to Branches and other Volunteer groups and also encourage and help to set up new Branches and groups.
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