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Asian MS Newsletter
The weekend will include research talks from world-leading scientists, question time debate sessions, around 100 exhibitors, seminars on various aspects of living with MS, complementary The main objectives of MS Life are to: health sessions (including reiki, pilates and yoga), beauty and pampering sessions, Get Active light Provide live, up to date evidence-based exercise sessions, and various social events such information for people affected by MS as club nights and fashion shows. There will also be a crche available, as well as an internet cafe Raise the profile of MS and the MS Society and interactive areas. among the general public Build relationships with people affected by MS Raise vital funds for the MS Society MS Life 2012 will have Get Active as its theme, in keeping with it being the same year as the London 2012 Olympics. Getting active will not just be about becoming physically active but also getting active in volunteering, campaigning and fundraising with the MS Society.
Asian MS will be present at MS Life. As well as running workshops, we will have a stall along with the MS Societys other support groups. There will be a live cookery theatre with the theme Food Around the World. We hope to attract top celebrity chefs to do demonstrations and help get MSers and their families into the kitchen and preparing healthy, exciting and tasty dishes.
For more information and to be kept up to date about MS Life, please go to: http://www.mssociety.org.uk/ms-events/ms-life-2012
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A Regional Outlook
-by Manisha Chandarana & Trishna Bharadia
In response to some requests after the last newsletter, here is some more information about the MS Register:
The MS Register is the first study to link information provided by MSers about how the condition affects their daily lives with clinical information from various pilot sites in the UK. This information could be used to help drive changes in MS management and services As someone who lives outside the M25 area, provision, offering real evidence to policy makers Asian MS member Manisha Chandarana is to support demand for services. keen to see greater support and activity at a People who have MS and are over 18 years old can participate. Initially, clinical information is being collected from a small number of pilot sites (Royal Victoria Hospital, Belfast; Western General Hospital, Edinburgh; St. Marys Hospital, London; Queens Medical Centre, Nottingham; and Morriston Hospital, Swansea), while lifestyle information is being collected online from MSers across the UK. It is hoped that more MS clinical centers will be able to get involved if a full Register gets the go-ahead. The Register is run by Swansea University and funded by the MS Society. To get involved, particularly with the lifestyle portion of the Register, please visit: http://www.ukmsregister.org
regional level from Asian MS.
While many of Asian MSs events have tended to be based around the South-East and London, particularly when MS National Centre has been involved, we know that there are plenty of members outside of the M25 area (there is, after all, a whole country north of Watford, and MS has no geographical boundaries!) So far, however, it has been difficult to easily incorporate these current and potential members into active participation.
In a bid to try to make the group more national, Asian MS is considering setting up regional coordinators who can promote the support group within their regions and act as a point of contact for members there. At a later stage, they could also organise events at a regional level. Asian MS is a very much a member-driven organisation, so your views are important to us. Please get in touch if you have any ideas or are interested in possibly becoming a regional coordinator.
FUNDRAISING FOR ASIAN MS If you are interested in fundraising for Asian MS, please contact our fundraising officer, Mukesh Jethwa on asianms@mssociety.org.uk We rely on donations to keep going so if you know of someone wanting to raise money for charity, why not suggest to them they fundraise for Asian MS?
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EVENTS
KEY DATES FOR YOUR DIARY Asian MS The Big Fundraiser Get ready to enjoy a gala event aimed at raising funds for Asian MS! This plans to be a fun filled event with great music, food, drinking and dancing. Most importantly, it will be Asian MSs main fundraising event so please keep your eyes peeled for more information coming soon and show your support. If you are interested in helping with the organization of this event or you have contacts that may be able to offer their services, please do get in touch via the Asian MS email address. 14th-15th April 2012 MS Life, Manchester The largest event in Europe for people affected by MS. It will include research talks, workshops, lifestyle events and an exhibition. Please see Page 1 for more details. 28th January 2012 - MS Research Day in London Barts and the London Neuroimmunology Group will be holding their third annual Research Day for people with MS and their families on Saturday 28th January 2012. The event will be held at Church House Conference Centre, Deans Yard, Westminster, London SW1P 3NZ. It is a chance for people to hear about the MS research being conducted by the group and to ask the team questions. Topics discussed at previous research days include: Vitamin D, EBV & MS, MS Sibling Study, Emerging MS Therapies and What is the evidence remyelination occurs? For further information please contact Maria Espasandin via email at m.espasandin@qmul.ac.uk or by telephone on 020 7377 7000 ext. 3303.
MS WEEK 2012 will be 30th April 6th May! How will you help raise awareness?
If you would like a copy of the MS Societys latest MS booklet, which has been translated into 12 languages including Urdu, Hindi, Punjabi, Bengali, Gujerati and Farsi, please contact Saher Usmani on 0208 438 0856 or susmani@mssociety.org.uk
BG-12 twice daily and by approximately 34% with BG-12 three times daily. This drug, which has good long term safety data (it has previously been used to treat psoriasis in Germany), looks like it may be a useful addition to our MS treatment repertoire. Alemtuzumab, or Campath, also presented positive results: Campath reduced the annual relapse rate by 55% compared to interferon. Importantly, there were no treatment discontinuations due to side effects, although slightly worrying is the fact that 2 patients receiving Campath developed thyroid cancer. Daclizumab, a treatment which needs to be injected once a month, gave some promising results with a reduction in both relapse rate and MRI evidence of MS activity over a 52-week period. Although this is only a tiny fraction of the data that was presented, it hopefully sheds some light on much of the work that is being done to develop new treatments for MS.
ECTRIMS on Shift.ms Shift.ms attended ECTRIMS and produced a series of videos rounding up various topics dealt with at the conference. Three are already online and can be viewed at:
Dr. Simon Shields on Current Therapies: http://shift.ms/magazine/2011/11/simonrounds-up-current-therapies/ Prof. Gavin Giovannoni on Injectable Therapies: http://shift.ms/magazine/2011/10/researchround-up-on-injectable-therapies/ Dr. Alasdair Coles on Alemtuzumab (Campath): http://shift.ms/magazine/2011/10/our-firstresearch-update-alemtuzumab-campath/
http://www.youtube.com/watch?v=7cFTO uIGgZw
MS THERAPY CENTRES
For anyone with MS, especially those affected by mobility issues, starting out on an exercise programme can be a daunting prospect. Risk of injury, fatigue and finding a type of exercise which is suitable to someones particular needs are all challenges which some may find too daunting to take on by themselves. A good starting point is an MS Therapy Centre. These independently-run organisations (which do not form part of the MS Society but which are found all over the country), can offer a wide range of exercise options and therapies for MSers with a wide range of abilities. Most have a trained physiotherapist who can undertake a consultation to tailor an exercise programme to an individuals needs, depending on what equipment is available at their centre. MSers who are still mobile can have the opportunity to use it like a personal training session, to build up muscle and core strength on gym equipment to help minimise problems in the future; while MSers who are less mobile can use it to help keep their muscles flexible and supple, especially if spasticity is a problem, using specialist equipment such as standing frames. All this can be done in a safe environment with trained specialists on hand who understand the specific needs of people with MS. Many centres also offer classes, such as yoga and pilates, which can also be beneficial for people with MS.
Dr. Monica Marta gives her Top 10 Tips for Exercise & MS in this useful video: http://shift.ms/magazine/2011/11/top-tips-onexercise-and-ms/
Trishna gives her take on being an active hockey player while coping with the effects of MS: http://shift.ms/magazine/2011/11/jolly-hockeysticks-with-a-sprinkling-of-ms/
Dr. Monica Marta answers MSers questions on exercising with MS in this video: http://shift.ms/magazine/2011/11/exercise-andms-your-questions-answered/
GET YOUR VITAMIN D: Throughout the winter months you wont get enough Vitamin D. Studies are showing that it can have real benefits for MSers. Dr Monica Marta recommends going on a nice sunny holiday. Not all of us can manage that so Vitamin D supplements are the next best thing to a warm sandy beach! Also see Dr. Rams video on Vitamin D: http://shift.ms/magazine/2011/09/vitamind-your-questions-answered/
MAKE SURE YOUR HEATING WORKS: Most energy suppliers have provisions for people who are chronically ill so its worth contacting them to see what they offer: http://news.bbc.co.uk/1/hi/business/4371186.stm
CONSIDER YOUR MEDICATION NEEDS: If you take medication, make sure you have sufficient supply. If you receive your medication at the hospital, make sure you have contingency plans in place if bad weather prevents you from getting to the hospital
EXERCISE: Professor Gavin Giovannoni emphasises exercising through the winter months. Keep active, fight the urge to hibernate on the sofa during those cold, dark days.
WRAP UP WELL: Dr Ruth Dobson reminds us that the flu jab whilst great doesnt protect against the common cold. So wrap up well, especially if the cold brings out your symptoms. Lots of layers are great for keeping you toasty. Many shops do those pretty attractive thermals (!), while there are also ranges of clothing (sometimes known as skins or baselayers) that keep body temperature regulated.
EAT YOUR FRUIT AND VEGGIES: Dr Monica Marta says she doesnt think winter tips for MSers are any different from anyone else keep up your fruit and vegetable intake over the winter months (not including chocolate oranges). There are fruits that are in season now, like clementines and satsumas, that are great for snacking. Root veggies like parsnips can be roasted (yum!) souped up or even made into a surprisingly yummy winter juice with the help of some ginger and orange.
Warwick looking at how those affected by MS (patients, carers and those who work in MS-related areas) use the internet to share their experiences. They will then look at how this affects their well-being and health. Participation involves a onehour telephone interview. To take part, you must have a link with MS and have used the internet to share your experiences or find out about other peoples experiences. This research is part of a project commissioned by the National Institute for Health Research (NIHR). To find out more please contact Fadhila Mazanderani on: f.mazanderani@warwick.ac.uk or 07593238097
MS Society Tissue Bank An MS Society-supported initiative to enable people with and without MS to donate their spinal cord and brain for MS research. Samples are processed and stored to help understand the causes of MS and the development of effective treatments. The Tissue Bank is the biggest MS-specific brain donor initiative operating in Europe. For more information contact: MS Society Tissue Bank, Wolfson Neuroscience Laboratories, Imperial College London, Tel: 020 7594 9734 or see http://live.mssociety.org.uk/msresearch/get-involved-research/ms-tissuebank
CLINICAL TRIALS The MS Society maintains a list of clinical trials that are currently recruiting participants. If you are interested please go to: http://live.mssociety.org.uk/ms-research/get-involvedresearch/get-involved-in-clinical-trials or call 07593-238097
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The Koffman Project This is a project that aims to describe and compare the experience of MS among White British and Black Caribbeans in London and identify those with advanced disease that have needs that could benefit from palliative care. It also seeks to explore awareness of, attitudes to, and preferences for advanced care, including palliative care and related services among Black Caribbean, White British and Asian people with advanced MS. Eligibility criteria to participate includes being of Asian origin with a diagnosis of MS, a member of Asian MS, over 18 years old and an EDSS score of 6.0. Research sites include Kings College
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FONAR Corp (FONR) Publishes New Breakthroughs in Multiple http://www.marketwatch.com/stor Sclerosis y/opexas-tovaxinr-for-thehttp://www.streetinsider.com/Corporate+News/FONAR+Corp+ treatment-of-multiple-sclerosis%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+S granted-fast-track-designation-byfda-2011-11-08 clerosis/6835287.html Care for multiple sclerosis patients unchanged in five years http://www.telegraph.co.uk/health/healthnews/8814345/Carefor-multiple-sclerosis-patients-unchanged-in-five-years.html Simvastatin study improves vision in optic neuritis http://www.mssociety.org.uk/ms-news/2011/10/simvastatinstudy-improves-vision-in-optic-neuritis Kelloggs to Add Vitamin D in Products to Address Genuine Health Concerns http://newstonight.net/content/kellogg-s-add-vitamin-dproducts-address-genuine-health-concerns Saffron ingredient shows promise for fighting MS http://www.emaxhealth.com/1020/saffron-ingredient-showspromise-fighting-ms Coming Out: Two 30-something MS patients talk about their experiences of being open (or not) about living with the condition on BBC Radio 4 http://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_C athy_Andrew_and_Emily/ Rare Gene links Vitamin D and MS (research by Dr. Ram) http://www.bbc.co.uk/news/health-16086004
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Multiple Sclerosis No longer a Disease of the West: MSIF http://www.indiaprwire.com/press release/healthcare/20111114103292.htm Genzyme Announces Successful Phase III Results for Alemtuzumab (LEMTRADA(TM*)) in Multiple Sclerosis http://www.businesswire.com/new s/genzyme/20111113005072/en Junior Giscombe talks about MS and his daughter http://www.dailymail.co.uk/health/ article-2066547/Junior-GiscombeMS-robbed-soulmate-takingdaughter.html
The deadline for the Spring edition of the newsletter will be 29th February 2012. Please email your news, stories, links and photos to: asianms@mssociety.org.uk
Useful Information
General and Membership Enquiries: asianms@mssociety.org.uk Website: http://www.mssociety.org.uk/ms-support/support-groups/asian-ms Facebook: http://www.facebook.com/AsiansWithMS Twitter: http://twitter.com/AsianswithMS Saher Usmani, MS Society Support Groups Officer (please contact for hard copies of this newsletter and MS information booklets in different languages): 0208 438 0856 or susmani@mssociety.org.uk
Vinnie Kochhar - Chair Asian MS is a national support group for Asians with MS, their carers, friends and family. We seek to increase awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. We produce online and printed information in various languages and offer an interpreting service. Anisha Gangotra - Social Secretary Mukesh Jethwa - Fundraising Officer Abul Kamali - Website Officer Rani Kaur - Publicity Officer/Support Officer Shiv Sharma - Treasurer
MS Society Website: http://www.mssociety.org.uk MS Society Helpline: 0808 800 8000 MS Register: www.ukmsregister.org MS Trust (charity that provides information about MS): http://www.mstrust.org.uk/ MS Therapy Centres: http://www.msntc.org.uk/ Shift.ms (an online community for younger MSers): http://www.shift.ms/index.php MS Research Blog (run by Barts & The London Neuroimmunology Group): http://multiple-sclerosis-research.blogspot.com
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