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Winter Issue 2011

Asian MS Newsletter

GET READY FOR MS LIFE!


MS Life is back and will be held over the weekend of 14-15 April 2012 in Manchester. Around 4,000 people with some connection to MS are expected to attend, which would be a rise from the 3,500 visitors to MS Life 2009 in Newcastle Gateshead. While the main audience for the event will be young people affected by MS, in the 20-40 year age range (the most common age for diagnosis), everyone linked with MS is very welcome to attend.

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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WHAT IS THE MS REGISTER?

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

A Round-Up from ECTRIMS


Dr. Ruth Dobson, a researcher from Barts and the London Neuroimmunology Group, attended the ECTRIMS 2011 conference in Amsterdam and has produced a round-up of the main outcomes, exclusively for Asian MS (see below). ECTRIMS is a professional organisation focused on the understanding and treatment of MS. It is an independent representative organisation that helps to enable communication among scientists and clinicians for the promotion and betterment of research, as well as the improvement of clinical outcomes in the condition. The organisation hosts the biggest annual international conference in the world that is dedicated to clinical and basic research in MS.

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/

ECTRIMS highlights by Dr. Ruth Dobson


The snappily titled Joint European Committee for Treatment and Research in MS and American Committee for Treatment and Research in MS (or ECTRIMS and ACTRIMS as they are better known) had their 5th joint congress in Amsterdam in October 2011. Over 4 days, cutting edge research highlights from the world of MS were presented to over 6,000 international delegates. Whilst it is difficult to pick the highlights out of such a crammed program, in my opinion much of the data surrounded novel therapies for MS. Promising results were presented from a trial of BG-12, or dimethyl fumarate, an oral therapy. BG-12 was shown to reduce the risk of relapse by 49 percent in patients who took the drug twice a day and 50 percent in patients who took it three times a day. The risk of disability progression was reduced by 38% with

RECENT EVENTS Asian MS Social 2011


The annual Asian MS social on Sunday 20th November was a great success, once again! There were lots of new faces at the Bombay Palace restaurant in London, which is testament to the work Asian MS has been doing to try to increase awareness of the group and increase its membership base. We were very privileged to be joined by Prof. David Baker from Barts and the London Neuroimmunology Group. He gave a very interesting, enjoyable and informative talk about emerging therapies. Other MS professionals that were in attendance included Dr. Paul Creeke, also from Barts, and Dr. Jonathan Koffman from Kings College London. MS Society representatives included Sonal Patel and Saher Usmani. The lunch gave people an opportunity to mingle and chat to others affected in some way by MS. Feedback was very positive, with many of the newer faces in particular saying that it was a great chance for them to be able to share experiences and advice. If you have any comments about the social or suggestions for next time then please email Asian MS!
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Amrit wins MS Societys Carer of the Year Award 2011


Following the news in the last newsletter that Asian MS member Amrit Gajjar had been nominated as Carer of the Year for the MS Societys 2011 Awards, we at Asian MS are very proud to report that Amrit was chosen to receive the award. Congratulations go to Amrit and his family. You can see a video of him after receiving his award at the following link:

http://www.youtube.com/watch?v=7cFTO uIGgZw

Young Carer meets JLS thanks to Asian MS


Nottinghamshire-based Libby Walker and her Mum, Hayley, were given the fantastic chance to meet pop group JLS backstage at their concert in Edinburgh in July, thanks to a Facebook competition run by Asian MS, with the help of committee member Rani Kaur. JLS band member Oritse Williams (pictured second from left) has a close connection with MS, as his mum has the condition. Libby, a young carer, was very excited to meet the band and enjoyed their concert immensely, although she couldnt make up her mind as to which band member was her favourite!

EXERCISE & MS The Peoples Hot Topic at Shift.ms


Exercise is one of the ways in which MSers can help themselves to stay healthy over the wintertime (see separate feature), however, exercising generally can be beneficial for MSers all year-round. Shift.ms has been running a series of articles and features via their online magazine, aimed at educating and informing about safe and beneficial exercise for people at all stages of the disease.

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/

For more information, go to: http://www.msntc.org.uk/

KEEPING HEALTHY THIS WINTER


These tips have come together with the help of the Neuroimmunology team at Barts & The London Group
GET YOUR FLU JAB: Dr Klaus Schmierer recommends you get your flu jab. Go to your local GP as soon as possible if you havent had it already. WASH YOUR HANDS: Tis the season of sneezes and sniffles. Whilst you cant stop that man on the train from coughing away, you can protect yourself and your family by washing your hands especially after going on public transport, advises Dr Monica Marta.

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.

LASTLY ENJOY THE FESTIVE PERIOD!

A CHANCE TO GET INVOLVED


Rapidly Evolving MS Study Imperial College London researchers are searching for those with rapidly evolving MS (either highly active RRMS, or SPMS) to be monitored in a range of areas including various blood molecule levels, MRI-visible lesions, quality of life and disability levels. Around 200 participants will be required and it is hoped that the findings will help with easier access to clinical trials or improved treatment options. The data will also hopefully help develop new diagnostic methods for rapidly evolving MS and tools to aid the prediction of future disability levels. For further information please contact Julius Labao: julius.labao@imperial.nhs.uk or 020 7594 6667 Bladder problems in MS An online survey, supported by the MS Society, looking at the effect of bladder problems on peoples daily lives if they have MS. Its takes around 20-30 minutes to complete and participants can receive a 10 Amazon gift certificate for taking part. Every completed survey will generate a 10 donation for the MS Society. United BioSource of the US is running the survey. The firm gathers evidence to aid firms in the development of healthcare products and help people make healthcare decisions. Hopefully the surveys findings will help develop management and treatment of bladder problems. For more information please see: http://www.mssociety.org.uk/msresearch/get-involved-research/researchSharing Experiences: Internet Use and studies#bladder_problems and https://surveyMultiple Sclerosis us.yougov.com/vkbMyJpKbnhgWq A study conducted by the University of

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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A CHANCE TO GET INVOLVED


Costs of MS in the UK This is a study being conducted by pharmaceutical firm Merck Serono and aims to estimate what the cost and burden is of MS in the UK. It will also look at variations in costs/burden according to whether people are on disease-modifying drugs and what the impact is on carers. The study involves the completion of a 10-20 minute online survey by people with MS and/or their carers. It is open to UK-based adults (over 18 years old) who have MS and all adults (over 18 years old) who care for someone with MS. More information is available on the MS Society website and the survey can be found at: http://www.surveygizmo.co.uk/s3/5580 04/UK-Multiple-Sclerosis-Survey Hospital, Queen Elizabeth Woolwich, and the PCT covering Lambeth, Lewisham and Southwark. Principle Investigators are Dr. Jonathan Koffman (KCH) and Dr. Eli Silber (QE). The Koffman Project is set to end in May 2012, before which it is hoped that a further eight Asians with MS can be recruited. If you are interested and meet the eligibility criteria, please contact one of the study researchers, Cassie Goddard on 020 7848 5627 or cassie.goddard@kcl.ac.uk

FUNDRAISING FOR THE MS SOCIETY

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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Gold Challenge is part of the


official mass participation legacy for London 2012, inspiring the nation to take on a range of Olympic and Paralympic sports whilst raising money for charity. It is also a social enterprise partnered with Sport England and the British Olympic Association. There are a wide range of charity partners linked to the initiative, with one of them being the MS Society. People can choose one of three sporting challenges in which to complete, as a team or individually, while at the same time fund raising for their chosen charity. More information is available at: http://www.goldchallenge.org/

LATEST RESEARCH & MS IN THE NEWS


Natural intestinal flora involved in the emergence of multiple sclerosis http://www.healthcanal.com/immune-system/22460-Naturalintestinal-flora-involved-the-emergence-multiple-sclerosis.html Opexa's Tovaxin for the Treatment of Multiple Sclerosis Granted Fast Track Designation by FDA (potential treatment for SPMS)

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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