~ Newsletter ~
_________________ Welcome to the May 2006 newsletter from the Information Point, the first ever issue, which I hope will be the first of many.
This year got off to a flying start - not only did we celebrate our fifth anniversary in March but the website got a whole new look and a website sponsor too.
Net-work are an internet service provider established since 1996, who have very generously offered to pay for our new domain name and web hosting for the next 2 years. This means we have been able to banish the adverts that appeared on the site previously and give the site a much more professional feel. We have received excellent feedback on the new design, so thank you if you took the time to write.
In this our inaugural edition we have updates on research and our webshop, lots of news about the recently launched Myotubular Trust which has been set up to raise money for research in Europe, together with news about the
Neuromuscular Centre, the only centre of its kind in the UK for people with all forms of Muscular Dystrophy and information on Patient Opinion and the Time to Get Equal Campaign.
The Beggs Laboratory are still enrolling patients for their research on congenital myopathies which includes Centronuclear and Myotubular Myopathy. Participation is voluntary, free of charge and travel is not required. Enrollment can be co-ordinated by a local healthcare provider or directly through the lab. Further information about the research programme can be found at the Beggs Laboratory website or alternatively information can be obtained through their research co-ordinator Elizabeth Taylor. Also at the Beggs Laboratory, a new project for parents without a specific diagnosis has been announced Andrea Uscinski, a student in the Brandeis genetic counselling program is conducting a study on the experiences and preferences of parents without a specific diagnosis for their child. The aim of the study is to allow healthcare professionals to better meet families' needs. A follow up study may take place at a later date for families with a definite diagnosis but for whom the type of illness is unknown. Already in progress however is the ‘Telling Stories’ project. The University of Glamorgan is inviting people to take part in an education project called ‘Telling Stories: Understanding Real Life Genetics’. We know that health care professionals should be educated in genetics but it can be difficult for them to make the link between what they are taught and how this relates to the people they may be looking after. This project will gather real life stories from the public and professionals to show the impact those genetic conditions have on real life and hopefully help health care professionals to gain a better understanding of genetics in practice. Further information about the project can be obtained from the Muscular Dystrophy Campaign.
The webshop allows you to find cheaper gas and electricity services, buy books and cd's, send flowers, even book your holidays all from the comfort of your own home and there are plenty of high street names, including M & S, Early Learning Centre, Oddbins, John Lewis and Carphone Warehouse to name a few. If you're making business purchases, why not try computer equipment from Novatech, broadband from BT or stationery from Euroffice? There are no administration charges and every penny raised goes to help with research. Sunday 2nd July 2006 There are 95 people currently registered to run the British 10K London Run who are running to raise funds for the Myotubular Trust - why not join them? To join, go to www.thebritish10Klondon.co.uk , sign yourself up as an individual entrant and then email the Myotubular Trust on contact@myotubulartrust.com Sunday 3rd September 2006 London to Windsor Bike Ride Bike Events is the UK 's largest organiser of fund raising and recreational cycle rides and they have agreed that Myotubular Trust fundraisers can join in with any of their bike events (subject to spaces). Bike rides are organised for 2006 around Europe (all of which have affiliated charities) but on condition that the Myotubular Trust makes a 5% contribution to the Bike Events' affiliated charity from monies raised, cyclists for the Trust can take part. For more information about cycle rides in your area and abroad visit http://www.bike-events.com/new/. If you join an event, please advise the Myotubular Trust on contact@myotubulartrust.com Want to be a Record Breaker?
If this is all a bit too active for you, here is another way you can get involved; the Myotubular Trust is going to attempt to beat the current record and make the Guinness World Record's Longest Bunting Line. Patient Opinion is a new service that tells you what other people are saying about your local health services and lets you share your story with others.
The service allows you to:
• See what other patients are saying about their health care For the service to work they need people to share their stories, opinions, suggestions, good and bad experiences. Stories about your experience of health services, whether you are a patient, a carer or a friend. What was good about your experience? What could have been better?
What you write will become public but your identity will remain private. You don’t have to share your real name or address – just your postcode and your email address if you have one. (These will not be shared with anyone). To find out more, visit the Patient Opinion website.
The NMC - Working with Muscular Dystrophy The NMC is a place where: • people with muscular dystrophy come and receive free physiotherapy and hydrotherapy The NMC is a charity established in 1990 by Sarah Kelly and Kate Fox who have both now retired. Their legacy is a very special warm and welcoming place that is full of fun and provides unique opportunities for work, training and treatment for adults with the vast range of conditions known collectively as muscular dystrophy.
Based in Winsford in Cheshire, it is easily accessible from the M6 motorway and people attend from all corners of the North West, North Wales as well as the Midlands and even the North East. NMC Physiotherapy A full range of specialist physiotherapy and hydrotherapy is offered free at the NMC. The highly professional and experienced team of Physios have vast knowledge of MD. Just get a referral from your GP or Consultant and then you’ll come for a full free assessment. A physiotherapy programme will then be devised that’s right for you. NMC Design NMC Design is a Graphic Design and Print company operating in the commercial arena. The company is run by people with MD and employs designers with MD. Their work is highly original and of high quality but very competitive on price too. NMC Training NMC Training is a part of NMC Design and trainees undertake fully accredited Graphic Design courses for students 16 and over. Trainees get the chance to go on and gain employment in NMC Design once they’ve successfully completed the training. NMC Transport NMC Transport is provided free for all our employees with MD, who want it, to and from work each day. This is means our NMC minibuses are very busy everyday – they are crucial to the running of the centre. Questions 1. Is there a waiting list for physio? No - we can arrange to assess someone for physio pretty well straight away and get started with a programme within a few weeks. 2. Are training places available now? Yes - we have training places for people to train on Graphic Design and basic computer skills now 3. How do I find out more? NMC General enquiries: 01606 861733
Have look at the website – www.nmcentre.com Arrange a visit and have a look around. 4. How are they funded? It costs over £500,000 a year to run the NMC. Working in partnership with the NHS PCT’s to partly fund physiotherapy services they generate income through NMC Design but the majority of the operating costs are covered because of very active fundraising and ultimately the generosity of supporters. |
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