Charity No: 1071196, Registered Company Ltd by Guarantee, No: 3557191 NEWSLETTER No. 23 Spring 2006 * We aim to alleviate the suffering of those with Alström Syndrome. * We provide support and information for patients, their carers and the Professionals who are working with them. * We endeavour to raise awareness amongst the public and medical professions. CONTENTS Editorial … Page 2 Kerry Leeson … standing for Chairperson Page 4 Medical News……..Page 6 Technology news ~ Page 8 Conkers World- Page 11/12 Alstrom Syndrome UK Conference 2006- Page 13 Jan’s Recipe ~ Page 16 Editor reports on Family News … Page 17 Alstrom International Conference 2007- 19/20 Contacts … Page 21 Chairman’s editorial - Spring 2006 I could not write this piece for this newsletter without mentioning the long awaited NSCAG funded Alström clinics. These have got underway now at both Torbay (for over 16’s) and at Birmingham (for under 16’s). Much more will be written elsewhere in this newsletter and in the future about them but I want to thank all who have worked so hard to make these a reality. This really is a groundbreaking approach which other rare conditions will be watching very closely with a hope to emulate. Not only are the clinics underway but we are moving to an agreement on how we, (i.e. your charity), can work in partnership with the clinical centres to make them both accessible and effective. We are striving to establish a service level agreement between AS UK and the trusts and that is now looking a real possibility. I urge you to support these efforts by continuing to attend whenever you can. Having said that, the rest of my contribution is on a completely different theme. As you will know my term as your chair will end this autumn. Already we are looking for volunteers to come forward and some excellent potential candidates have emerged. One, quite reasonably, asked me about the role of chair person – what do I actually do? (A question which has crossed many minds I am sure). So I thought I would describe how I have interpreted the role. (I put it that way because despite there being certain requirements of any job, each individual will develop it in their own way – playing hopefully to their strengths). Role of Chairman of Alström Syndrome UK – a personal perspective The board of directors (or trustees if we were simply a charitable trust), are charged with the management of the charity in accordance with the articles of association and charity law. It is the directors’ responsibility to ensure that our activities are directed towards furthering the stated aims of the charity and remain legal. In this we have our legally qualified company secretary, Kay and accountants to help us. These responsibilities are set out in a trustee job description which describes the main responsibilities as: * To ensure that Alström Syndrome UK complies with charity law, company law and any other relevant legislation or regulations; to pursue the charity’s objectives and apply its resources exclusively to that aim. * To contribute actively to the board of trustees’ role in giving direction, setting policy, defining goals, setting targets and evaluating performance. * To safeguard the good name and values of Alström Syndrome UK. * To ensure the effective and efficient administration of the charity * To ensure the financial stability of the charity * To monitor the proper investment and management of the charity’s funds and property * To approve the system of appointment of the chief executive and of monitoring his/her performance * To use any specific knowledge or experience they have to help the board of trustees reach sound decisions Specific additional activities the chair will have to address are: Chairing directors meetings I work with Kay to ensure that an agenda is drawn up which give directors meetings the opportunity to address all the relevant issues. If matters come to a vote which is tied, as chair I have the casting vote. Otherwise I do not vote on matters before the board. That does not however, prevent me from expressing a view! Taking minutes is not something the chairperson would normally expect to do but I had experience of taking minutes so ‘volunteered’ to do it myself. Newsletter contribution I write a piece for the newsletter each quarter. Annual report of accounts I write a narrative for the annual report which our accountants compile and forward each year to the charity commissioners. This also involves inspecting the accounts and raising any questions which to me seem appropriate I also sign and ensure that other directors sign the relevant parts of the report. Representing the charity As chair, I act as the formal representative of AS UK to other charities, government or official bodies. This may mean anything from signing letters on behalf of the charity or face to face negotiating. Fundraising I support fundraising activities in any way I can – with encouragement, information, lobbying, money etc. Often Kay will ask me to critique fundraising applications (although she does all the hard work)! Providing leadership As founder and company secretary of AS UK, we all appreciate Kay is the driving force behind our charity. Through her experience and respected profile in the charity world of rare diseases, Kay especially is the person many identify with when they think of AS UK. As chair I have attempted to provide leadership in more subtle ways – working with Kay and John and other members of the board to ensure that our plans and activities are properly directed and successful. I have attempted to identify and prioritise policies and activities. I have also contributed formal documents to try to place the charity on a more ‘professional’ footing. Conferences At our own conference I formally welcome delegates and speakers and act as chair or the family day’s activities. I represented AS UK at the ASI conference in 2003. Occasionally and if available, I will attend other national or local meetings which are relevant. I hope this gives you a flavour of what I do and will not put off any prospective candidates. Remember, every one moulds a job in their own style – another person will undoubtedly do things differently - and probably better! John and Kay Parkinson Report It has been a busy and exciting time with the new NHS Alstrom clinics giving specialist multi-disciplinary care for our families. We have organized patients lists ( not appointments!) for clinics at Birmingham and Torbay Hospitals and it has been lovely to see you all. Negotiations are still underway to ensure that AS UK charity is properly funded for our work and that we remain equal partners in our children and young peoples care. As a patient support group we have all worked together to get better care for those affected by Alstrom Syndrome and your continued support is vital for the clinics to continue. Please keep us informed of your experiences of the clinics good or bad so that we can help ensure that they meet your needs. Below you will see a newspaper cutting- John’s father who is 91 and received the MBE on 24th May this year nominated Alstrom Syndrome UK to be a beneficiary in a charity football match which was held on Sunday 21st May. Teams played for the Matthew Parkinson Memorial Trophy. By all accounts the game was a big success, despite torrential rain which fell that day and a cheque for Alstrom Syndrome UK will soon be on its way. New Alstrõm Syndrome UK Information leaflets are now available- thanks to funding from the Claire Milne Trust. Please e-mail info@alstrom.org.uk or ring 01803 524238 if you would like some and state how many you would like. Timetable for next Alstrom Syndrome UK Board meetings 2006: June 17th 2006 Time: 1:30 pm -4:00pm Location: Birmingham Children’s Hospital, Birmingham October 21st 2006 Time 2:00pm- 3:00pm Location: Yew Lodge Hotel, Derby Alstrom Syndrome UK Medical News Insulin Resistance Insulin Resistance: Metabolic Syndrome Increases Your Risk of Diabetes and Heart Disease What's the difference between a syndrome and a disease? A syndrome is a combination of symptoms that add up to a specific disease or the high risk of a disorder. Metabolic syndrome, for instance, indicates a set of symptoms that creates a high risk of two health problems that are of great interest to AS UK members: heart disease and type 2 diabetes. (Metabolic syndrome is sometimes referred to as metabolic syndrome X, so for our purposes in this e-Alert I'll abbreviate it as "MSX.") Fortunately, there are ways to address metabolic syndrome without resorting to drugs. In fact, a new study shows that a fairly simple dietary change may help reduce the risk of developing MSX. But those who try to incorporate this change into their diet need to be careful about their food choices, or they could end up actually increasing their risk. The whole is greater than the parts The definition of MSX varies slightly, depending on guidelines established by different health organisations, but the core symptoms include the following: a.. Excessive abdominal fat b.. Elevated blood pressure (130/85 or higher) c.. Low HDL cholesterol level (Less than 50 in women, less than 40 in men) d.. Elevated Triglyceride level e.. Elevated C-reactive protein level f.. Fasting glucose level that indicates insulin resistance/glucose intolerance The presence of three or more of these symptoms is enough to diagnose MSX. And it hardly needs pointing out that these symptoms add up to a very troubling combination of health risks. For instance, a 2002 study at the University of Kuopio in Finland attempted to establish the relative risk of heart disease associated with MSX. Using records from The Kuopio Ischaemic Heart Disease Risk Factor Study, researchers examined data on more than 1,200 men (aged 42-60) collected for about 11 years. In 1984, at the outset of the study, none of the men had either heart disease or diabetes. Nearly 15 percent of the subjects developed MSX over the 10-plus years. The men in this group were more than three times more likely to die of heart disease than those who didn't develop the syndrome. According to the World Health Organisation, almost one third of all middle-aged men and women may be at risk of developing metabolic syndrome. The insulin connection Unfortunately, many doctors simply treat the symptoms of MSX individually instead of addressing the syndrome as a whole with regular exercise, dietary changes and supplements of key nutrients such as omega-3 fatty acids. Now a new study confirms that whole-grains may be an important dietary factor in reducing the risk of MSX. As reported in the journal Diabetes Care, a group of researchers from Harvard and Tufts University used six years of data collected from the Framingham Offspring Study to examine associations between carbohydrate intake, insulin resistance and the incidence of metabolic syndrome in more than 2,800 subjects. Analysis of the data produced these two results concerning insulin resistance: 1) Those with a high intake of total dietary fibre, fruit fibre, cereal fibre and whole grains had a low risk of insulin resistance, and 2) Those whose diets had a high glycemic index (GI) and glycemic load had a high risk of developing insulin resistance. As for metabolic syndrome, high risk of MSX was associated with high glycemic load, while those with the highest intake of whole grains and cereal fibre were less likely to develop the syndrome. The researchers speculate that a high intake of whole grains may reduce the risk of developing metabolic syndrome. And while that might be true for many people, the fact is that products labelled "whole wheat" or "whole grain" in the average supermarket will probably not meet the criteria for lowering MSX risk. There's whole... and then there's "whole" MSX is a complex health challenge. So simply upping whole grain intake will not be a silver bullet answer to avoiding metabolic syndrome. But avoiding phoney whole grain breads, cereals and other products just might help keep the syndrome at bay. US physician Dr William Campbell Douglass says about processed breakfast cereals: "If you start your day the Kellogg way, you'll get what you deserve - obesity and diabetes. Cereal, muffins, and other standard breakfast offerings contain massive amounts of sugar - or pure carbohydrates that your body converts to sugar. Bombarding your system with these foods every morning will make your pancreas work overtime to produce insulin - and wearing out your pancreas will lead to diabetes. "Oatmeal is an excellent example of where you can see the difference between processed and unprocessed for yourself. Purchase a box of Quaker Oats ('Old Fashioned - 100% natural') and a can of McCann's steel-cut, Irish oatmeal (made in Ireland). Open the lids and compare. They don't even look like the same grain! And the taste difference is remarkable - Quakers is mushy, McCann's is crunchy. Once you go natural, you will never turn back." Report on first two Alstrom Syndrome NSCAG funded clinics 2006. Birmingham Alstrom Syndrome Clinic Thank you to all the staff and families who attended the children and young person's Alstrom medical clinic on May 8th. This was the first clinic held specifically for children, since the National Specialist Commissioning Advisory Group (NSCAG) commissioned the service from Torbay and Birmingham Children's Hospital NHS trusts. We ran this clinic in partnership with Alstrom syndrome UK and are grateful to them for their kind support to make these clinics successful. The Torbay team kindly came to Birmingham and provided audiology, medical screening, echocardiography, dietetic support and diabetes specialist nursing support in conjunction with the local Birmingham team. Some of the families who attended completed feedback forms, which were very positive; if any of you have forms you have not yet returned, please post them back to me at Birmingham Children's Hospital. I hope by the time you read this you will have received the clinic letters; these will be going out at the beginning of June (4 weeks after the clinic). I am sorry for the delay, but am keen to collate as many of the investigation results as possible to send out with the letters. If any of you have medical questions that I can help with, or concerns about your child's management, you are very welcome to contact me via my secretary at the end of this letter, and I will try and return your call within the week. The next children's clinic is being held on Monday 24th July; please let either my secretary Lesley Porter or Kay Parkinson know, so that we can start planning the clinic and improving it according to your suggestions. Thank you again to those who came, and I hope it was useful and not too daunting for your children. Dr Timothy G Barrett Reader/Honorary Consultant Paediatric Endocrinology and Diabetes Institute of Child Health University of Birmingham Postal Address: c/o Diabetes Unit Torbay adult Clinic 28/04/06 Six patients were invited by AS UK between 10-30am and 5pm. Five were able to attend . A carousel or rota of appointments was devised in order to facilitate most effective access of each person to all of the health care personnel and tests felt to be helpful. The seminar room (where drinks and lunch were available)labs and clinic rooms in the Heart and lung unit were all used, with one trip to the audiology department and one 6 minute walk. The professionals involved felt that they managed to see patients effectively and calmly, .including cardiology, endocrinology, diabetes and diet, audiology, psychology, and respiratory medicine. It was felt that full blood tests on all were indicated, both to ensure completeness of review and to correlate current test results with any symptoms and physical examination findings. Full review letters and emails have been dispatched to each patient and their health care teams locally within four weeks of the clinic. We would hope to reduce this time in future clinics. It would have been difficult to see more patients than this on one day. The next full adult clinic is scheduled for Friday 15th September 2006, with the same professionals available. Dr Richard Paisey Technology news Heard any good movies lately? Most popular cinema releases are available with audio description for visually impaired people. Over 170 U.K. cinemas have the facilities to screen these films. Cinema audio description is similar to listening to a cricket or football match on the radio, having the action described to you. The normal film soundtrack comes through the cinemas surround sound speakers in the usual way, and a recorded narrator explains what's happening on screen - in gaps in the dialogue - through personal headphones. Only a very small percentage of DVD releases are audio described (latest below), so catch a film while you can at the cinema! Every week there are around 3,000 audio described shows around the UK. Ask for an a.d. headset at the box office. The audio description is broadcast through personal headphones - only you hear it. Heard any good movies lately? Before 'accessible' cinema came about the vast majority of blind or partially sighted people didn't visit the cinema. If they did, a friend or partner would usually explain what was happening on the screen, often to the annoyance of other members of the audience. That's all changed now with digital 'access' cinema equipment. A separate soundtrack is broadcast through wireless headphones, describing the on screen action which only the wearer can hear. There are thousands of audio described shows every week, in over 170 cinemas. It's a quiet revolution in the world of sensory impaired people, thanks to the cinema industry, the film distribution industry, technology companies, the R.N.I.B. and other organisations representing disabled people, and the people themselves - thousands of whom, on hearing of the U.K. Film Councils' proposal to fund 50% of the cost of cinema 'access' equipment - wrote and expressed their views on the subject. Organised nationwide campaigning and publicity of accessible shows helped to bring it all together. All these separate entities worked together to make it happen - and quickly. Audio described films available to suitably equipped cinemas include: Walk the Line, Chicken Little, Munich, King Kong, Chronicles of Narnia, All the Harry Potter films, Wallace and Gromit, Pride and Prejudice, War of the Worlds, Charlie and the Chocolate Factory, Star Wars Episode 2 and 3, Ray, The Aviator, The Incredibles, Bridget Jones 1 and 2, Shrek 1 and 2, All the Lord of the Rings films, The Passion of the Christ, Love Actually, Finding Nemo, Calendar Girls and many more. Audio described films on DVD and video. Over 100 DVD's with audio description are now available to buy or rent (full list and mp3 samples below). Check the usual outlets - Blockbuster, HMV etc. Or try the online rental service from Screen The a.d. track is just another of the eight available audio tracks on DVD. Some of these tracks are commonly used for director / cast commentaries. Pressing the 'audio' button on the DVD remote control selects the available audio tracks. Audio description is also available on video cassettes from the RNIB. The original soundtrack is replaced with an audio described track. Over 150 video titles are now available to buy or rent, including classic films such as Casablanca, Citizen Kane, It's a Wonderful Life, Singing in the Rain, The Third Man, West Side Story, Wizard of Oz and Strangers on a Train. More recent titles include the Disney titles, Harry Potter titles, Titanic, The Aviator, The Incredibles, Finding Nemo, The Lord of the Rings trilogy, The Matrix trilogy, Calendar Girls, Chicago, Pirates of the Carribean, and many more. To receive a Home Video Catalogue of all the available titles or to order a video, please contact RNIB Customer Services, or telephone 0845 702 3153, or email cservices@rnib.org.uk You can view titles online here: http://onlineshop.rnib.org.uk/browse.asp?n=11&c=50&sc=158&it=1&l=3 Many shows on TV are audio described too. Many TV channels offer audio description on the digital platforms. Over 8 million people in the UK currently recieve audio description through Sky Digital, by setting the set top box to "narrative" mode from the language menu. Channels with regular audio description include BBC channels, ITV, Channel Four, Five UKTV, Living TV, Sky One, Sky Movies, Discovery and more. Programmes described include the most popular soaps like EastEnders, Coronation Street and Emmerdale. Children's programming like Blue Peter and Fimbles feature are also described. Audio described TV listings on the Sky platform: http://www1.sky.com/accessibility/tvguide.htm#anchornameAD A.D. on Freeview currently requires a non standard (Netgem) Freeview box costing around £90, or a media centre from Portland costing over £800. Audio described TV listings on the Freeview platform: http://www.tvhelp.org.uk/audes/schedule.php NTL cable currently broadcast BBC 1, BBC 2, Discovery and Trouble channels with audio description. They plan to add another 70 channels by the end of 2006. For more information, please contact NTL on 0800 052 2000, or visit their website here: http://www.home.ntl.com/page/epgaccessibilitystat Telewest cable currently broadcast BBC 1, BBC 2, Channel Four, and Five with audio description on channels 851 to 855. They plan to add more channels. For more information about this, please contact Telewest on 0845 142 0220. Here is a very useful link to the RNIB's website section on audio description: http://www.rnib.org.uk/audiodescription Visit the excellent BBC Ouch guide to audio description here: http://www.bbc.co.uk/ouch/closeup/audiodescription_guideto.shtml Our 'talking website' and 'web over phone' service. If your computer has a built in speaker, or speakers attached, you can have the weeks audio described cinema listings read aloud by clicking this link: http://www.yourlocalcinema.com/ad.speech.html. This is particularly useful in a library or internet café, where there is usually no 'screen reader' software available. You can also use the 'Browse Aloud' system by downloading the Browse Aloud plug in from this link: http://www.browsealoud.com/downloads.asp?dl=bl. To have the weeks audio described cinema listings read to you over the phone, please dial 087 0222 0333 (national rate, 24 hours a day, 7 days a week). To navigate simply use the 1, 3 and 5 buttons on your phone to move back and forth through the links. 1 to go back, 3 to go forward and 5 to read an article. Or if you would prefer to speak to a human - please call us on 0845 056 9824 (local rate). Our call centre is open 24 hours a day, 7 days a week. Let us know which town you are in and we'll tell you if there are any audio described films being screened in your area. Alternatively, you can email us on ad@yourlocalcinema.com. This is our preferred form of communication and results in the fastest response. Contact us: If you have any queries on audio description, or would like information on the internet and telephone speech technologies used to enable this website to be more accessible to people with visual impairments, please contact us on 0845 056 9824 (local rate), or email ad@yourlocalcinema.com. Alstrom Syndrome UK Children’s Outing Sunday 22nd October 2006 “Conkers World” Anthony Broadley (Mike’s son-in-law) we get everyone involved! –who is a teacher has kindly offered to organise the 2006 Alstrom Syndrome UK children’s outing to Conkers World. (See below) www.visitconkers.com Anthony informs me that a Ranger tour has been booked for a guided woodland tour and educational activities, following this there will be the following activities available: A Labyrinth Discovery Centre Artscape Willow swamp Aerial Walkway Storyteller If you want to reserve a place for your child please e-mail info@alstrom.org.uk or ring 01803 524238 together with details of any special requirements needed for your child (over and above AS) NOW!   CONKERS, the award winning attraction at The Heart of the National Forest, a unique mix of indoor and outdoor experiences to keep you and your family engaged for hours. Five miles from Junction 11 on the M42. Our friendly team offers a warm welcome, with informed advice on all the activities available on site. Events at CONKERS click here   Indoors there are 4 discovery zones designed for children and adults of all ages. We also have a Tree Top Walk in the Discovery Centre and indoor play centre for children at Waterside. Visit our Kids section 23 different outdoor activities: including lakeside walks, sculpture & nature trails, an assault course, train rides, playgrounds & water play! Take our Interactive Tour An educational resource that ties in with the National Curriculum. Visit our Education section Lakeside restaurants, specialist shops and a plant centre. Visit our Facilities section Regular workshops, craft and music events for children and adults, and ranger led activities. Visit our Events section Disabled access for visitors to CONKERS          Alstrom Syndrome UK 9th Family Conference       Best Western Yew Lodge Hotel 33 Packington Hill, Kegworth, Derby, Derbyshire, England DE74 2DF Hotel: 91 Bedrooms AA Guest Rating: 4.35 Our pleasantly furnished en-suite bedrooms provide a high degree of comfort, only minutes from junction 24 of the M1 2 miles from Nottingham East Midlands Airport, 6 miles from Loughborough, 11 miles from Nottingham city Centre     This stunning hotel, well located for the M1 and Nottingham East Midlands Airport offers over 90 well appointed en-suite bedrooms including executive rooms, together with the Orchard Restaurant which has been awarded an AA rosette for excellence in food. In addition the hotel has a wide range of meeting and conference rooms for meetings and seminars from 2 - 200 delegates. Don't miss a visit to Reeds Health Club & Spa, where use of the pool and gym are included in your room rate when you stay with us. Full business facilities are available together with high speed internet access. Wireless internet access is available in public areas. Best Western Yew Lodge Hotel has been recognised as Best Western UK Hotel of the Year 2005. DRAFT OUTLINE Conference Programme Saturday 21st October 2006 Families can arrive at the Yew Lodge from 2:00pm onwards. 2:00pm-Directors meeting in the lounge. 3:00pm-Young Adults meet in the lounge for a Young Adults Meeting. 4:00pm Volunteers meet in the lounge for a briefing. Doctors and other health specialists will be available over the weekend for individual consultations 6:30pm – Welcome Dinner. Entertainment by our young people Charity Auction- everyone please bring something to auction- all proceeds to Alstrom Syndrome UK Sunday 22nd October 9:15 – Children meet at reception for children’s outing. 9:30 – Coach leaves for “Conkers World “ 10:00 Family Conference 5:00pm Conference Closes ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Monday 23rd October Adolescent and Children’s Clinic ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ RING 01803 524238 or e-mail info@alstrom.org..uk to book your place for the Family Conference and Clinic. Alstrom Syndrome UK 9th Family Conference 2006 “ Living With Alstrom Syndrome” 10:00 - Welcome – Dr Michael Hales, Alstrom Syndrome UK Chairman. 10:10 – Kion - Kerry Leeson mother of our youngest diagnosed member, talks of her experiences and answers any questions. 10:30 – Curtis and Taylor- Brian and Sue talk of their experiences of having two boys with Alstrom Syndrome and their boys sporting activities. 11:00 – Gavin - Margaret gives us an overview of living without a diagnosis for 33 years. 11:20 COFFEE 11:40 GUEST SPEAKER- Mr Shannon Caldwell - Alstrom Syndrome International (ASI) “A” Team leader talks of his experience of Living With Alstrom Syndrome and his work for ASI. 12:40 Charlotte - DVD of Charlotte Parkinson appearing on “This Morning TV” show talking about Living with Alstrom Syndrome. 1:00pm LUNCH 2:00pm DIRECT PAYMENTS- Judy Grant-Direct Payments Officer Torbay Care Trust. 2:30pm Medical Updates –Dr’s Barrett and Paisey–Alstrom Syndrome Clinic Service leads. 3:00pm Informal available chats with medical, social and family support. 4:00pm CLOSE Changes to the way R N I B does business with customers. You may already be aware that R N I B has recently made a number of changes in order to make buying products, publications and other R N I B services much easier. The improvements have been in place from April 2006. Changes include: No handling charge on any orders: The œ2.50 handling charge which previously applied to orders has now been removed. Improved choice of payment methods: Customers are now able to pay by direct debit for products, publications, magazine subscriptions, transcription and R N I B membership, as well as donate to R N I B using this method. Payment methods for Talking Book subscriptions will remain unchanged. Customers can continue to pay using existing methods, such as credit/debit card and cheque, but individuals will no longer be able to pay on account after 3rd April 2006. Account arrangements will continue to be in place for organisational customers. Delivery charges: R N I B will now recover delivery costs where postage charges are incurred. Single copies of leaflets to individuals or orders delivered as Articles for the Blind will not incur delivery charges. For more information about these changes, please contact R N I B Customer Services on 0845 702 3153. Jan’s Recipe SALADS Gone are the days when salads were only served on hot summer days and always consisted of lettuce, tomato and cucumber. Now salads are served all the year round and include numerous exciting ingredients available most of the year although it is always a good idea to use seasonal ingredients. Which ever type of salad you chose it is always fun to put together salads consisting of contrasting flavours, colours and textures. Apart from a wonderful array of salad leaves one has a choice of salad vegetables;-avocado pears, beetroot, carrots, celery, courgettes cucumber, fennel, mushrooms, onions, peppers, radishes and tomatoes which are eaten raw in salads. Vegetables such as broad beans, French beans, mange tout and peas are best blanched in boiling water for several minutes whereas potatoes need to be fully cooked before including in salads. Of course herbs enhance most salads and it is fun and easy to grow your own supply. Herbs like, basil, chives, dill, mint and parsley are a good choice for children to try and grow especially with their wonderful aromas. Not all salads are based on lettuce. One can combine vegetables, fresh and dried fruit, nuts, seeds, pulses, grains and pasta with numerous dressings. All sorts of ingredients may be used in salad dressing - yogurt, crème fraîche, honey, garlic, herbs, citrus and other fruit juices are just a few. One can find an amazing array of ready made salad dressings on the supermarket shelf but many also contain a large number of calories. Making your own does not have to be complicated and something like French dressing consisting of olive oil, wine vinegar and mustard can be made in a larger quantity and stored in a screw-top jar in the refrigerator for use later. If using mayonnaise as a dressing, use half/half mayonnaise to plain yogurt which produces a lighter result with a lower fat content. I have included three salad recipes that may provide some ideas. BEAN and TOMATO SALAD 2 large tomatoes diced 1 tablespoons extra virgin olive oil 1 tablespoon balsamic vinegar 225g fine green beans 100g bag salad leaves 1 tablespoon chopped walnuts (optional) 1. Put the tomatoes in a large bowl, toss in the olive oil, season with salt and pepper then add the vinegar. 2. Put the beans in a pan of boiling water and cook 3-4 minutes. Drain and refresh with cold water, drain well. 3. Add the beans to the tomatoes and toss well. 4. Now add the salad leaves toss together and serve immediately sprinkled with nuts. Variations I use this salad as a base and add varying addition ingredients. These include: chopped avocado pear, apple, celery or cucumber, spring or red onion and chopped pepper. CARROT and COURGETTE SALAD (serves 4) 225g carrots peeled and grated 150g courgettes trimmed and grated 25g raisins 25g sunflower seeds Dressing: 3 tablespoons orange juice 1 tablespoon white wine vinegar 1 tablespoon olive oil 1 small clove garlic peeled and crushed (optional) 3 tablespoons chopped chives (or 2 chopped spring onion) 1. Using a food processor makes life easier when preparing this recipe. Place the grated vegetables in a sieve and allow the excess liquid to drain off before transferring to the serving bowl. 2. To make the dressing, whisk all the ingredients together in a small bowl. 3. Stir the raisins into the grated vegetables with the sunflower seeds. Pour the dressing over and toss well and serve. This would be an excellent salad to add to a child’s lunch box SPICED CAULIFLOWER SALAD (serves 6) 1 bunch spring onions trimmed 2 tablespoons olive oil 2 level teaspoons ground coriander, 1 level teaspoon ground cumin and 1level teaspoon turmeric (these can be replaced by 1 teaspoon mild curry powder) 50g unsalted cashew nuts 2 level tablespoons mango chutney 1 level tablespoon white wine vinegar 3 tablespoons Greek yogurt 4 level tablespoons chopped parsley 1 medium cauliflower 1. Cut the spring onions into 1cm lengths. Heat a small frying pan and add the spices, onion and nuts and cook for 2-3 minutes - then tip into a large bowl 2. Roughly chop the mango chutney and stir into the bowl with the vinegar, yogurt, and ¾ of the parsley. 3. Divide the cauliflower into small florets and cook in boiling water for 3-4 minutes. Drain and while still warm stir into the dressing. Leave to marinate for 2-3 hours if possible stirring occasionally. 4. Turn into a serving bowl and sprinkle with the remaining chopped parsley AS UK Editor Sean Waiting - Says Hello and rounds up news from our families. Hello to our families. I am sorry if some people did not get the winter newsletter at the beginning of February because I was having a new tower fitted to the computer and some of my e-mail addresses were lost from my address book but I have sorted out now and I hope it dose not happen again. I hope every body is well. We have had two family clinics one in Birmingham and one in Torbay and I would be grateful for your feed back on them please don’t for get this is your newsletter and you can send me what you want in the newsletter. Dear Alstrom Syndrome UK families and friends, Alstrom Syndrome International extends a very warm invitation to all Alstrom UK families and friends to attend our 5th International Family Conference at Fort Worth, Texas, USA from May 25 - 28, 2007. The conference will be the biggest and best Alstrom Syndrome event ever, with an estimated 250 attendees and 18 countries being represented! The conference will prove to be an event not to be missed and will provide educational, support and entertainment sessions like never before. Conference sessions will include medical topics by specialists on ASI's Scientific Advisory Board such as: - Cardiac issues and treatment options (Andrew Warren) - Hearing issues; are cochlear implants a good solution? (Claes Moller and Katarina Johansson) - Endocrine issues (Pietro Maffei) - Renal issues (Deogracias Pena) - Pulmonary issues; is prevention possible? (Elizabeth Matsui) Other sessions include: - Basic clinical management for adults, basic clinical management for children, behaviour and development, education advocacy, depression, diabetes management as well as: - Coping and Living for Parents - Becoming an Adult; Taking Charge (for young adults with Alstrom Syndrome) - Bereavement group sessions for bereaved families - Sibling support - Circle of Friends (for parents of younger children) - "No Holds Barred", a seminar for parents and doctors. "In their own words... people with AS speak out". - Adaptive Technology and more! Fun of all kinds will be had by young and old alike. Come visit the world's largest Honky Tonk (Billy Bob's), dance and be merry, watch a live bull-riding competition, visit Six Flags Entertainment Park with huge roller coasters, or just choose to sit and relax by the pool and make new best friends with your Alstrom "family" from around the world. There is no conference registration fee for families. Room costs are $72 (USA currency) per night, per double room (2 double beds). To reserve your spot at the conference, please contact me at the following address/phone number as soon as possible: Sandra Surette, Family Services Coordinator Alstrom Syndrome International RR#3 Tusket, Box 47 Yarmouth NS Canada B0W 3M0 e-mail: asisandra@eastlink.ca Phone: 902-648-2143 Come join us "across the pond"! I'm looking forward to seeing you! Regards, Sandra 5th Alström Syndrome International Family Conference MAKING A DIFFERENCE: PARENTS AND PATIENTS IN THE KNOW Patients Green Oaks Hotel Ft. Worth, Texas Families May 25-28, 2007 Professionals MEDICAL AND EMOTIONAL STRATEGIES FOR FIGHTING BACK! Delaying, Moderating, Treating, and Managing Alström Syndrome CONTACT INFORMATION Robert P. Marshall Jan D. Marshall Executive Director Scientific Advisory Board (207) 244-7043 (800) 371-3628 robin@acadia.net jdm@jax.org www.jax.org/alstrom Please send articles for the next newsletter to Mr Sean Waiting by e-mail sean@waiting6415.freeserve.co.uk or ring 01229 832672 by the end August 2006 AS UK Directors contacts. Margaret Livingstone Tel 01637 830057 Jane Entwistle Tel 01962 623476 e-mail jane.entwistle@hants.gov.uk Dr Mike Hales Tel 01803 843227 e-mail mike@mhales.fsnet.co.uk Kerry Leeson Tel 01709 709430 Simon Rogers Tel 0207 4980587 e-mail simon@profantasy.com Sean Waiting Tel 01229 832672 e-mail sean@waiting6415.freeserve.co.uk Advisors (Non- Executive) of the Alstrom Syndrome UK:Medical and Scientific Board are : Dr Richard Paisey- Chairman Dr Cathy Carey Mr Seamus Mc Dermott Mrs Kathleen Williams Ms Debbie Hodge Ms Clare Rocket Dr Tim Barrett Dr Jamie Smith Members of the Medical Board can be contacted through Kay Parkinson Tel 01803 524238 STAFF Mr John Parkinson Email: alstrom@syndromeuk.freeserve.co.uk Chief Executive Mrs Kay Parkinson Company Secretary Tel 01803 524238 ALSTRÖM SYNDROME UK 2006 1 Issue No 23 Spring 2006 - - ALSTRÖM SYNDROME UK 2003