Asian ms 2013 issue 1


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Asian ms 2013 issue 1

  1. 1. Issue 1 - 2013 Asian MS – Newsletter VITAMIN D - The Sunshine Vitamin Vitamin D is a vitamin that supporting a causal role for vitamin D is being increasingly deficiency on MS risk. The data recognized as essential for suggests that a large proportion of MS health. We can make cases could be prevented by vitamin D through exposing increasing vitamin D levels in the our skin to sunlight or general population. through taking supplements – it is rare in foods. Evidence for a treatment effect of vitamin D in modifying the course of However, vitamin DDr. Sreeram Ramagopalan MS is not as strong as evidence for a deficiency is now known to preventive effect. We await the databe an epidemic worldwide, mainly as a result from large randomized controlled trialsof our changing lifestyles - reduced sun (the gold standard to assess if aexposure and increasing time spent indoors treatment works) to assess the effect ofprevents us from making vitamin D, thusmaking us vitamin D deficient. vitamin D on relapse rate and disability. However, MS patients will benefit from vitamin D supplementation forVitamin D and MS prevention of osteoporosis and fractures, where vitamin D undoubtedlyThe notion that vitamin D was involved in the has a protective effect. This is evencause of MS was originally proposed to more important as it is now known thatexplain the geography of MS. MS risk MS patients have a much higher riskincreases with increasing latitude (the further for fractures than people without are from the equator) and decreasingsunshine exposure. The hypothesis gainedcredibility after it was shown that vitamin D has Amount of Vitamina potent effect on the immune system. D Needed?Studies that measure vitamin D levels in the Vitamin D is measured in Internationalblood have shown that individuals who Units (IU). Sun exposure in the middaydevelop MS have lower vitamin D levels summer sun can generate 10,000 IUbefore disease onset. These studies provide within 15 minutes. However, becauseperhaps the strongest evidence to date of the lack of sun in the UK,Page 1 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  2. 2. supplementation may be the only way ofobtaining adequate vitamin D. It is thought Do YOU have a personal story tothat based on current levels in the generalpopulation, adults need to be taking tell?approximately 5,000 IU of vitamin D perday to ensure vitamin D sufficiency. Youshould get your levels tested to see whereyou stand (ask your neurologist or MS If you would like othersnurse). Experts suggest that people with to hear about yourMS use more vitamin D than people personal journeywithout MS and thus MS patients mayneed to take more than 5,000 IU of vitamin with MS thenD per day- perhaps 10,000 IU. As with please do get ineverything, there is the risk of toxicity of touch with us here at Asian MS. Emailtaking too much vitamin D, but there is no at all to suggest that 10,000 IU ofvitamin D per day is toxic. Supplementalvitamin D comes in two forms - D3 (the oneto go for as this is the same vitamin Dproduced by the sun) or D2 (not normallypresent in the body and may have actions FUNDRAISING FOR ASIAN MSdifferent to D3). ~Dr. Sreeram If you are interested inRamagopalan fundraising for Asian MS, please contact our fundraising officer, Mukesh Dr. Sreeram Ramagopalan (“Dr. Ram”) is a Jethwa on Post-Doctoral Research Fellow at Barts and the London, working for Prof. Gavin Giovannoni. He is also a Programme Leader at the University of We rely on donations to keep going so if Oxford. He completed his undergraduate you know of someone wanting to raise degree and doctorate at the University of money for charity, why not suggest that Oxford, under the supervision of Prof. George they fundraise for Asian MS? There are Ebers. further details in this newsletter about how to make a donation and what the For his PhD, Dr. Ram studied the genetics and the epidemiology of MS. He is currently money is needed for. interested in how gene-environment interactions influence the risk of developing MS. He has also just completed an MSc in Epidemiology at the London School of Hygiene and Tropical Medicine (University of London). Deadline for the next edition of He is a regular speaker at conferences the newsletter is 31st May 2013. worldwide, research days and MS Society/Asian Please send your stories, links, MS events. He received an MS Society Shining Star Award in 2012, for which he was nominated photos and news to by Asian MS. 2 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  3. 3. A message from the Editor…… Spring has finally arrived required. (supposedly!) and with it comes the On a personal note, I wanted to share with you first edition of our newsletter for my first challenge of 2013. I finally bit the bullet 2013. As ever, this is a packed and tried my hand (or should that be “feet”?!) at issue that we at Asian MS hope you snowboarding. The photo opposite was quite a will find useful and informative. typical position for me during my trip – bottomOne of our aims is to help raise awareness about MS and a way down in the cold snow – but I got through theof doing this is by providing information to our members. four days and managed to make it down a slopeHowever, developments are happening all the time and another with no broken bones. Fatigue was a realgreat way to stay abreast of the latest research is to attend one problem by my final day, however, my instructorof the MS Research Days that are held by neurology groups in was brilliant and hauled me up whenever Idifferent parts of the country. We are reporting back on two in couldn’t muster up the strength myself. I’d saythis edition – one in London and one in Oxford – both of which getting down the slope on that final day was 5%were invaluable sources of the latest research. skill and 95% sheer determination and stubbornness! It’s something I would definitelyA regular speaker at research days is Dr. Sreeram try again – as a sun lover, it’s great to at last findRamagopalan, who has provided us with the cover story for this something useful to do with snow!edition. With summer approaching, it’s important for MS’ers tobe aware of the importance of making the most of their daily ~Trishna xdose of sunshine. However, with the British weather like it is,hopefully Ram is able to help our members understand what the PS. As always, please do pass thisrole of Vitamin D has in MS and why supplementation may be newsletter on to anyone who may be interested CONTENTS-Vitamin D, The Sunshine Vitamin….p.1-2 -General News….p.17-18-A message from the Editor….p.3 -Dates for your diary….p.19-WAMS (Women Against MS) Launch….p.4 -Recipe From Lubna; Asian MS roles p.20-News and Happenings…..p.5 -General Information….p.21-MS Research Day Reports….p.6-8 -Latest Research & MS In The News….p.22-Current Research Studies….p.9-12 -Fundraising For Asian MS….p.23-Getting away on a break….p.13 -Useful Information….p.24-Classifieds….p.14-Support Scheme….p.15-16Page 3 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  4. 4. WAMS – a new group for Women Against MSWAMS is a tailored support group that fits the needs wife, mother, daughter, sister, partnerof women affected by MS. It aims to become a etc., and how they have overcomevalued support network based around the themes of them.Caring, Sharing and Empowering. Offering a listening Overall the day was a great successear, information sharing, support and advice, it is and people seemed to especiallyaimed at women who have MS and who live in welcome theLondon and the surrounding areas. opportunity to chatThe group was launched in January 2013 at an event with Hilary and speakheld in the beautiful grounds of Hampton Court to her about where thePalace. I attended as a representative of Asian MS MS Society couldand as someone who was interested in seeing the improve its services Hilary Sears - Chair ofdevelopment of a new MS support network within the the MS Society for members. I’m sureLondon area. WAMS will go from strength toThe day started with a chance to mingle and have strength, particularly if the momentumsome lunch. It was a good opportunity to find out that was built up during the launch canwhat people expect from a support group, something be maintained!that Asian MS can also build on. Highlights of the afternoon included ~Trishna (Asian MS Newsletter Editor) talks from Stewart Long (Head of Working Locally at the MS Society), WAMS: Hilary Sears (Chairman of the MS Society) and Jo Johnson (author of me/localservices/women-against-ms “Shrinking the Monster”). Johnson talks about The day ended with “speed omen-Against-MS-London- how to cope with MS networking” - a chance to meet UK/147356341995217?ref=ts&fref=tspeople who we didn’t already know. It was a greatway to meet other women with MS and find out the “Shrinking the Monster”:challenges they have faced in their various roles as a resources/shrinking-monsterPage 4 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  5. 5. NEWS AND HAPPENINGSIla is shortlisted as Volunteer of the Masons’ Valentines Ladies FestivalYear On 16th February 2013 Nayna and I hosted a Valentine Ladies Festival at The Hilton, Milton Keynes. There Every year the Royal Borough of were some 85 people present, including Asian MS Windsor and Maidenhead recognises the Committee member Ila Gangotra and her husbandwork carried out by volunteers in the community, Ramesh. The evening was most enjoyable. The Ladiesand Asian MS Committee member Ila Gangotra Festival is an annual event amongst Masons and I, as the current Master and President of the Festival, heldwas nominated for her work with the Windsor and this event not only to thank all the ladies for theirMaidenhead Community Forum and the Hindu patience and from whom we are away during ourSociety of Maidenhead. Asian MS would like to meetings throughout the year, but also to show ourcongratulate her on this wonderful honour. At the appreciation for their hard work and understanding.awards ceremony Ila met Sophie Christiansen, thegold medal-winning Paralympian and even got tohold her medals from London 2012!Trishna makes last five for MSInspiration AwardYour very own Newsletter Editor was very honoured to Kanti, Nayna and their family with Ramesh and Ilahave been nominated for the MS Inspiration Award at theOxford Research Day that was run by the Oxford I, being the Master of my Lodge in London, put the MSUniversity Hospitals NHS Trust. I was surprised to have Society as my main charity together with Medical Trauma. We aimed to raise as much as possiblebeen nominated in the first place and was even more through our Masonic members. We raised a good sumsurprised to make the shortlist of the last five! I was at the Festival through a raffle and auction. The finalnominated for the work I’ve done on this very newsletter amount of funds raised will not be known until my yearand for helping to raise awareness of MS in the Asian of office finishes at the end of September 2013. ~Kanti Kalidas, Asian MS membercommunity, as well as my other work with MS charities,such as Thank you to my nominator, I felt Kanti was diagnosed with Primary Progressive MS in April 2010. He is a member of the Surrey branchhumbled to be placed among the other nominees, who of the MS Society, as well as being an avid supporter of Asian MS. He is heavily involved inincluded avid fundraisers. I thoroughly enjoy my work with fund raising and is also keen to raise awareness ofMS charities and compiling this newsletter, so it was MS within the Asian community.lovely to be recognised for doing something that I love!Page 5 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  6. 6. What’s going on at Barts and UCL PartnersThe 4th MS Research Day run by Barts and the London member Dr. Sreeram Ramagopalan, as wellneurology group was held in Westminster in February and as Professor Sandra Amor, Professor Davidthis year was the first to be run in collaboration with UCL Baker (who has spoken at an Asian MSPartners, an academic health science centre located in event before), Dr. Jeremy Chataway, Dr.London. This meant that the speakers list was greatly Ruth Dobson and Dr. Ahmed Toosey, toexpanded and a wider range of subjects was being name but a few.discussed. Lifestyle discussions included cognition, theThe format of the day was similar to the 3rd MS Research neurological exam, cannabis, symptoms,Day, with a timetable of set presentations taking place in the clinical trials, and pediatric MS.main hall and two additional rooms housing researchers andmedical professionals to discuss lifestyle issues and the If you would like to see presentations fromscience behind MRIs and the pathology of MS running in the day, please visit:parallel. A new feature was a “Question Time” discussionthat was filmed behind closed doors and that would be available on the Barts MS Research blog. More about 55E__NlUmDeWs66JegQuestion Time later, as it involved Asian MS committeemember Ila Gangotra, as well as various MS experts and Keep up to date with when the nextresearchers. Research Day is happening by visiting the blog on a regular basis! For previous Research Day videos see the following links: A05CD7CD6704250D (2012) always, the list of presentation subjects was wide- A05CD7CD6704250D (2011)ranging and offered attendees an insight into the latestdevelopments in MS research. They included: spasticity, energetics in MS, the eye as a window to the C5BBC29967E2E7E9 (2010)MS brain, the role of MRIs as a tool in neuroprotective andneurorestorative MS trials, virology and an update on theCharcot project, how to make lumbar punctures less painfulfor MS research, an update on clinical trials for progressiveMS, bone health in MS’ers, public engagement, and anupdate on genetics and MS. Speakers included Asian MSPage 6 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  7. 7. Knowledge is Power by Ila GangotraKnowledge (noun) - familiarity, awareness, or Some of the topics covered were citizenunderstanding gained through experience or study petitions to the FDA, the question of(reference: approvals to use already available drugs in peopleSince my MS journey began, knowledge has been a focal with MS,point of every decision that has been considered or made. stem cellWith two daughters that have the condition, it has always therapies,been of utmost importance to me that they are able to make “liberationinformed choices regarding treatment and symptom therapy,”management. That’s why I take advantage of every vitamin Dopportunity I can to expand my knowledge base whenever The Question Time Panel as a causepossible. or an effect of MS, healthy lifestyles influencingI have recently had the opportunity to attend and participate disease course, and whether we will see ain two excellent research events. cure for MS in the next 10-15 years.I was honored to be invited by Professor Gavin Giovannoni I would highly recommend people to watchand Alison Thomson to be a lay member on the Question the videos that are now available viaTime panel during the 4th Annual Research Day run by Barts YouTube at:and the London Group. Questions had been submitted byreaders of Team G’s blog and they were to be addressed answered by a panel made up of neurologists, 55E__NlUmDeWs66Jegresearchers and me. It is a great opportunity to really delve intoI was very nervous to begin with, however Alison Thomson the world of MS research and hear some of(Designer and Researcher at Queen Mary, University of the country’s top experts speak about theLondon), who was organizing the event, quickly put me at issues that are foremost in the minds ofease and introduced me to the “Jargon Bell.” The bell was MS’ers. By the end of the session I definitelygiven to me to press whenever I didn’t understand felt more knowledgeable and it was a realsomething that was being said by the professionals on the privilege to have been able to participate inpanel, as the likelihood was that if I didn’t understand it then the initiative!nor would some of the viewers! As it happens, I didn’t needto use it as much as I thought I would, as all the expertswere able to explain things clearly and in an easy tounderstand way. A few weeks later, I also attended the Oxford Research Day, which was held by theThe panel was chaired by Dr. Gareth Pryce and other panel Oxford University Hospitals NHS Trust. Thismembers were Prof. Gavin Giovannoni, Dr. Jeremy was a good chance to get a more roundedChataway, Dr. Ruth Dobson and Prof. David Baker. picture of what is going on in the world of MSPage 7 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  8. 8. research, as it would(continued from p.7) Research Day – A Personal Viewadd to what I’d already learned from Church House Conference Centre was originally built in 1887 tothe Barts and UCLP Research Day in commemorate the Golden Jubilee of Queen Victoria. Many yearsFebruary. later on 2nd February 2013, I visited for the first time. This was the 4 thThe day was filled with a series of annual MS Research Day run by Bart’s and the London Group. Aspresentations and after lunch there was invited guests of MS patients, family members and friends gathereda dedicated space for a question and in the Circular Conference Hall, the circular ceiling bore the words,answer session. The day was rounded "Holy is the true light, and passing wonderful. Lending radiance to them that endured in the heat of the conflict, from Christ they inherit aoff with award presentations for Oxford home of unfading splendour, wherein they rejoice with gladnessMS Research Young Investigator 2013 evermore." A beautiful sentiment to what lay ahead.and MS Inspiration 2013. For the Research Day has but one purpose - to enlighten. The dayThe presentations included: “Identifying begins with the basics, “What is MS?” A variety of specialists aremultiple sclerosis stages with blood invited to talk about progress in theirtests and computer learning” (Dr. own research. Issues on medicationJames Larkin), “Genetic-pathologic and disease progression arecorrelations in MS” (Dr. Gabriel De addressed and the floor is open toLuca), “Amiloride Clinical Trial in Optic questions from the audience and,Neuritis (ACTION)” (Dr. Calliope inevitably, to competing researchers.Dendrou), “MRI Research in MS” (Dr The MS patients or MSers, as someLucy Matthews), and “New Emerging prefer to be called, are invited to practical sessions throughout the day. This open atmosphere allows everyone to enjoy the day at theirTherapies in MS” (Dr. Andrew Weir). own pace.The day was excellent, with lots of time Every year, new and interesting information comes to light. One piecefor questions. I’m sure it will go from of research suggests that MS could be related to endogenousstrength-to-strength each year. It gives retroviruses - a viral element that has integrated into the DNA andpeople an opportunity to chat with other which, for the most part, remains dormant for millions of years. So ifMS patients and researchers, as the these viruses can somehow become active and lead to conditionsresearch process is a two-way such as MS, it would change our understanding of genetics as adialogue. whole.~Ila Gangotra is an Asian MS committee Another integral part of the Research Day was to help attractmember who has a particular interest in volunteers for new research studies. The day helps to provideMS research and developments potential volunteers with more information and strengthen theirIf you would like more information on the knowledge, to help them to make informed choices. trials being conducted by this group, please contact the MS Trials Office on ~Sarabjit Thethy completed a nursing degree and is currently a 01865-231869 or at healthcare assistant working in theatres, as he looks for a nursing post. He describes himself as “a scientist by heart, nurse by nerve, and poet by nature….”Page 8 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  9. 9. A CHANCE TO GET INVOLVED THE MS REGISTER – Have you signed up yet?Mindfulness based CBT for PPMS’ersand SPMS’ers The MS Register is a ground-breaking studyThis pilot study, being run designed to increase ourat King’s College London, understanding of living withaims to see whether a MS in the UK. You can take part by completing amindfulness programme series of simple online questionnaires.could be beneficial for people with progressiveforms of MS. Mindfulness is a technique that You will then be reminded every three months tohelps with distressing emotions, by paying record any changes in your condition in the lifestyle,attention to the present, utilising meditation symptoms and medication sections.methods. If you are over the age of 18 and living in the UK,Participants will be randomly allocated to a with a confirmed diagnosis of MS made by awaiting list group or mindfulness group. The consultant neurologist, you are eligible to take partmindfulness group will have to attend 8 one- in this study.hour sessions (on per week) that will bedelivered online via group-based video There are also a small number of pilot sites that areconferencing. Mindfulness participants will be collecting clinical information: Royal Victoriagiven the option of having two MRI scans – one Hospital, Belfast; Western General Hospital,before and one after the course – that will Edinburgh; St. Mary’s Hospital, London; Queen’sexplore whether the course results in any brain Medical Centre, Nottingham; and Morristonchanges. Participants would be asked to Hospital, Swansea.practice mindfulness meditation on a regularbasis, using CDs that will be provided. They http://www.ukmsregister.orgwill also be required to fill in 10 questionnaireson three occasions – each time they will takearound an hour to complete. KEEP YOUR EYE OUT! The MS Society maintains aYou can participate if you have PrimaryProgressive or Secondary Progressive MS, list of research studies andhave NOT received any formal mindfulness clinical trials that aremethods training, are NOT receiving any other currently recruitingpsychological treatments (currently), you do nothave severe concentration problems, and you participants. If you areare NOT highly distressed. Participation runs interested please go to:between November 2012 and June 2013. more information contact Angeliki Bogosian k/ms-research/get-involved-at or 020-718 in-research80190.Page 9 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  10. 10. A CHANCE TO GET INVOLVED Get involved with your local Experiences & perceptions of healthcare Healthwatch services from people with MS and their From April 2013 a new patient champion clinicians body, Healthwatch, will be launched in This study, being run by the University of every local authority across England. Manchester, aims to collate the experiences of Each local Healthwatch will be MS’ers of health care services and looking into what they believe has been helpful or needs responsible improving. for collecting views and experiences of health and social care services from The findings will be presented to health care services, in an attempt to make the experiences patients, carers and all members of the for people with MS better and potentially improve public. They’ll be responsible for making patient care. sure your views are listened to. Participants will be required to chat to a The MS Society is aware that there are researcher about their experiences of health care lots of gaps in MS services across the services for MS, as well as their health care country. If you have concerns about MS needs in terms of psychological/emotional and physical symptoms. This will last for around an health and care services in your area, get hour and can occur at your house, work or at the involved with your local Healthwatch and University of Manchester. Please note that make your voice heard. This is a real organisers of the study are unable to reimburse travel expenses. A small group of participants will opportunity to put MS on the map and be invited to attend a follow-up interview six and your chance to address local issues. twelve months after the original interview. If you’re already active in your local Participants can attend the original interview Healthwatch the MS Society, and Asian without having to participate in the additional interviews. MS, would like to hear from you so we can share your story to help inspire other Participants must be over 18 years old and have a confirmed diagnosis of MS. They should also be people. Contact Samantha Kennedy living in the Greater Manchester region. It is at or on running between September 2012 and 020 8438 0700 and/or Asian MS at September 2013. For more information contact: Abigail Methley at or For more information on Healthwatch visit on 07950 619 368. 10 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  11. 11. A CHANCE TO GET INVOLVED ‘Tell me about your pain...’ – Pain in MS (PiMS study)Personal Experiences of People with MS – AnExplorative Study This study, being run by the Institute of Psychiatry at King’s College London, aims to This study, being run by the explore pain in MS from the patient’s point of University of Oxford, aims to view. In particular, how you view pain, how look at the experiences of you deal with it on a daily basis, how it affects people with MS, you and what your views are on improving identifying changing pain management and current care provided. needs and how Findings from the study will hopefully help clinicians can researchers to develop new treatments aimed provide support at at improving how people with MS deal withdifferent stages of MS. Study findings will their pain.hopefully help to improve health services forpeople with MS and will be shared amongst The study seeks to find out about yourresearchers, clinicians, people affected by MS, experiences of health carepolicy-makers and academics. services that have tried to help you with your pain; whether itParticipants would be asked for a face-to-face was helpful or not and whatinterview about their experiences of MS, needs to be improved, in your opinion, in theincluding what their thoughts and feelings have future. The findings will be shared with healthbeen at different stages, how you have made care services and researchers to improve thedecisions and how you have obtained care service experience for people with MS. Itinformation. The interviews will probably last for will also aid researchers in developing morearound an hour and will be audio recorded. focused questions for a bigger postal surveyTo take part, you need to be living in the UK, study that starts in June 2013.have MS and be over 18. Recruitment for Participants will be interviewed by aparticipants is happening now and the interview researcher, either over the telephone, at work,can be arranged for a time and date that is at home or at a King’s College Londonconvenient to you. The exact date for recruitment building. Unfortunately, travel expensesis unknown, however, it is predicted to be around cannot be reimbursed. Interviews will last forJune 2013. The interview will be arranged to take around 30-60 in a venue convenient to you. Participants need to have a confirmed MSFor more information please contact Abi Eccles diagnosis, be over 18 and experience someat or on 07587-142597. form of MS-related pain. It runs from March 2013 to July 2013. For more information, please contact Anthony Harrison at or call/text 07936-448926 leaving your name and a contact number.Page 11 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  12. 12. A CHANCE TO GET INVOLVED MS Society launches a pioneeringA Flourishing Life: Single Women Living new research strategyWell with MS The MS Society has launched a new research strategy, that will be effective from 2013 to the end of This study, being run by 2017. The strategy aims to ensure that the best, most the University of East relevant research is funded, which will bring new treatments through to people with MS as quickly as London, aims to look at the possible. experiences of single women living with MS. A lot The strategy will lead to a much more targeted of previous research approach to funding research. concentrates on MS as an The MS Society hopes that this will ensure itsillness and has neglected people who are living research programme continues to bring life-changingsuccessful, productive and happy lives whilst benefits to people affected by with the challenges of MS. Hopefully, the Priority areas will include:study results will form the basis for moreresearch on psychosocial wellbeing of people  Identifying and testing treatments that canwith MS and lead to the development of slow or stop progression in people with MSinterventions to support people with MS. (including neuroprotective and immune-based therapies)Participants will be interviewed face-to-face and  Developing ways to predict the course of MSthe information they provide will be analysed. and preventative and risk reduction strategiesAll data will be made anonymous and will be for MSsecurely stored. Interviews will last for around40-60mins and will take place in  Increasing our understanding of myelin repairNorth Kent and London. with an emphasis on translating our current knowledge into treatmentsYou can take part if you are asingle female who is over 18 The MS Society has also established a ‘Priorityand who has had a Setting Partnership,’ the James Lind Alliance.confirmed MS diagnosis for at least two years. This project will establish what the MS researchThe study is running between February 2013 priorities are for health professionals and peopleand September 2013. affected by MS. The Society wants to produce a list ofFor more information contact Jane Stuchbury the top 10 priorities that emerge from the exercise, inby email at order to help shape its care and services research programme, as well as further clarify specific priorities for biomedical research. You can find out more by visiting: 12 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  13. 13. MS Activity Weekend Supported short breaks – A new partnership with Carers Trust andFriday 24th - Monday 27th May 2013 local Crossroads Care schemesFor people with MS, their families andfriends People affected by MS who live in England and Wales can now access care and support duringChoose from a variety of activities or their short breaks and holidays, thanks to a newrelax in the tranquil setting of the partnership between the MS Society and Carersbeautiful Kielder Water & Forest Park. Trust.3 Nights £317 Care will be provided by trained care supportIncludes accommodation, activities and workers from local Crossroads Care schemes,all meals which are network members of Carers Trust. TheyOr book the Respite Care Package will come to wherever you are staying, to provide(over 18s) that support for you. Having someone else take3 Nights £488 over the caring responsibilities for a while meansIncludes care, accommodation, activities that families can go away together – or people withand all meals MS can travel independently – safe in the knowledge that the main family carer will get a To book call 01434 250232 or chance to rest and recharge their batteries. email enquiries@calvert- This is a pilot project, so at the moment supported short breaks can be taken at destinations in most of Wales, on the south coast of England and in East To find out more about the Anglia. Calvert Trust’s Exmoor, Kielderand Lake District sites, please go To find out more about the service and how it to: works, or to order an information leaflet, call 020 8438 0805 or email If you are thinking about going on holiday but have accessibility needs, there is a wealth of information and support available online to help you plan your trip. A good source of information is: Even if you don’t have accessibility needs, travelling when you have MS does often need some extra planning. If you are flying with medications, make sure you inform the airline beforehand and carry a letter from your neurologist/MS nurse. A bit of forward planning will help to make your holiday hassle-free!Page 13 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  14. 14. Accessible caravan The North Surrey MS Society branch has a two-bed accessible caravan with full veranda and wheelchair ramp access, available for holiday hire and based at Church Farm in Pagham, West Sussex. The Rio Willoughby is a comfortable and stylish caravan specifically designed with the needs of wheelchair users in mind. It has a spacious lounge/diner, a kitchen with lowered work surfaces, a bathroom with walk-in shower, and two bedrooms. Church Farm is a 5* Haven site with a great entertainment schedule and two swimming pools. For further information, please contact Caroline Keenan on 020 8393 7750. Lisnaskea MS Society Northern Ireland has two fully accessible chalets available for hire at the SHARE village in Lisnaskea. The cost is £200 per week and includes a SHARE fitness leisure pass. Bookings are taken on a first come, first served basis. To book a holiday please contact Mark on 028 9080 2802 or Holiday LodgeWest Herts MS Society branch has a holiday lodge at Shorefield Holiday Village, near Lymington,Hampshire, for people with MS, families and carers. The chalet has a master bedroom with en suiteshower room, a twin bedded room, bathroom, and lounge/kitchen area with double fold-out sofabed. Bookings can be made by calling Richard Smith on 07709 235 729. (Please leave a messageif necessary and you will be called back) Mention of advertisement by Asian MS of products or services is not an endorsement by Asian MS or its committee membersPage 14 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  15. 15. SUPPORT SCHEME Mentioned in the last newsletter, the MS Society is running a scheme which Asian MS is supporting. This is a great opportunity for our members to become involved in this innovative pilot scheme. It is a pilot scheme that assists people with MS to plan ahead and to identify the types of support that is available to them, if they need more help to carry out day to day activities. You can’t predict how your MS will affect you over time, however, you can plan what support you may need for day-to-day activities. Most people who have any sort of long term condition have a support network around them – friends or relatives who will help them with day-to-day activities all the time or when they are having an aggravated episode of their condition. The purpose of the project is to help people think through their needs for every day, how they will cope when things are worse and provide a slightly more formalised record of who has agreed to help. The scheme will run during 2013 and will help people to plan and identify what help is available to them. A trained volunteer from Asian MS will help individuals to write their own support plan. The plan will detail the support each person will need to carry out daily activities if they need more help than usual. The volunteer will be the participant’s point of contact for help. A small grant of £100 will be made available for the person with MS to spend on providing support. They can use the money for almost anything they need, for example contributing towards the cost of petrol if a colleague gives them a lift to work. People will be eligible for the scheme if they meet the following criteria:  If they have MS  Agree to set up a support plan  Agree to be part of the evaluation of the service Please see p.16 for an example of a support plan. If you are interested or know anyone who has MS (this is open to all types of MS) and would like to get involved, please email Saher at the MS Society at or call her on 020 8438 0856.Page 15 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  16. 16. Example of a Support Plan .Name: Felicity Farmer (This is a lady that has small children, and workspart-time. She has friends and family close by to support her)What help do you think How often Who is your Who is the How much money to sayyou will need? do you 1st choice alternative ‘thank you’ / pay for think who can person who support? you’ll provide this can provide need this support for this support if support you? your 1st per day / choice isn’t week? available?Someone to drive the Twice a My friend My friend £10 towards petrolchildren to school day Donna, as Traceyand home again her children go to the same schoolShopping for food Twice a My friend My friend £5 bunch of flowers to week Pam as Tracey say thank you she can do my shopping at the same time as hersTravelling to and Twice per My My dad £10 towards petrolfrom work if I cannot day colleaguedrive Philip lives near by and I can share a lift with himTo save you looking for contact numbers when you need them, why not list them hereso they can all be easily found.Mum & Dad: 01273 555555 Donna: 01273 666666 Tracey: 01273 777777 Pam:01273 888888 Peter: 01273 333333 Philip: 01273 444444 Jo: 01273 222222Page 16 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  17. 17. GENERAL NEWS MS SOCIETY AWARD MS Matters gets NOMINATIONS NOW a new look! OPEN If you’re a member of the MS Society then you will already beNominations are now open for the MS Society Awards familiar with the MS Matters2013. These awards highlight the achievements of people in magazine. In summer-2013, a new-the world of MS – those living with the condition, theirfamilies, carers and MS professionals. There are ten look MS Matters will be launched,categories: Carer, Digital Media (new!), Employer, which will differ according to theFundraiser, Media, Professional, Researcher, Volunteer, country in which the recipient lives.Young Person, and MS Inspiration of the Year (given in thegift of the MS Society). Magazines being sent to Northern Ireland, Wales and Scotland willAnyone can nominate so if you know of someone whodeserves to be recognised then get nominating! If you would feature four to eight pages of nation-like any help or support to make your nomination, please specific content at the front, andcontact Vinnie Kochhar at Asian MS on stories from across the throughout. Therefore, the NIThe deadline for all nominations is 19th April 2013. Winners Newsletter, MS Linc and MSwill be announced at an invitation-only awards ceremonythat will take place on 17th October. For more information Connect will stop being produced.please email or go The last issues of those will beto delivered in the spring.society-awards-2013 Currently, there are no plans toAsian MS member Amrit Gajjar was a previous winner of significantly change the version ofthe Carer of the Year Award. You can see him herecollecting his award in 2011. MS Matters that is received in England, following an MS Society survey that showed very high satisfaction among England-based members.Page 17 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  18. 18. GENERAL NEWS MS Register launches inaugural newsletter MS In the Media Asian MS Committee The first newsletter members Sanjay Chadha from the MS Register is and myself (pictured below) were featured in a now available for its documentary produced by participants. Those running the Register Priyal Raja. believe it is important to share information with those taking part, to show how they are contributing towards its success. Included in the first issue is information about the Register’s progress since it was started, Shiv Sanjay the newly published research, the work The film was made by a person with MS, completed after the collection of data and the starred people with MS and aimed to provide events that the MS Register will be attending information for people with and without MS about how having a positive attitude can be in 2013. beneficial. All those involved were determined to show that MS will not get the better of them, They are keen for feedback so if you are part “Jab Tak Hai Jaan, Jab Tak Hai Jaan...!” of the Register and want to share your Priyal is doing a filmmaking degree at the experiences, then they are interested in University of West London in Ealing. I met him hearing from you so that you can be included a few years ago with his parents and sister at an Asian MS event in Slough, which launched in the next newsletter. the Society’s MapMS campaign ( There will also be a Twitter and Facebook Priyal is an editor of the online magazine campaign., where he does articles on what’s going on in Bollywood and also You can access the newsletter by clicking on interviews Bollywood celebrities. He is the link below: currently assisting Prakash Jha in his latest Bollywood movie “Satyagraha,” which is releasing in August 2013 and stars Bollywood greats such as Kareena Kapoor, Amitabh ad/4885/1 Bhachan, Arjun Rampal and Ajay Devgn. Priyal is also a big cricket fan and is into Indian music. ~Shiv Sharma (Asian MS Treasurer)Would you be interested in becoming a regional contactfor Asian MS? We’d love to hear from you as we want to You can view the video on YouTube by clicking build a network of support for Asian MS’ers around the the following link: country. Please contact us at for further information. H7o&feature=youtu.bePage 18 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  19. 19. MS Week 2013DATES FOR This year, MS Week will take place between 29th AprilYOUR and 5th May. This year, the MS Society will be raising awareness about the challenges MS’ers face inDIARY accessing the right support and healthcare at a local and national level. There will be lots of ways to get involved and to raiseAsian MS Annual Meeting funds to help support the MS Society. You can also useThe Asian MS Annual Meeting has come the opportunity to help raise awareness of MS within thearound again and will be held at MS National Asian community and fund raise for Asian MS! If youCentre in Cricklewood, London, in May 2013. need help to set up any events, then please contactThe Annual Meeting is a chance to elect your Mukesh Jethwa, the Fundraising Officer for Asian MS, atcommittee for the year, hear some fantastic and have an opportunity to meet There will also be information about MS Week appearingother Asian MS members and people on the MS Society’s website:involved in the MS Society. There is always of food, drink and chat. Whether you’re a week-2013new member or a long-standing one, we’dlove to see you down there. More details, Cake Break 2013including the exact date and time, will be This year, the MS Society is hoping tosent out to members in an email bulletin so raise around £350,000 through itskeep your eyes peeled! Members and non- popular cake breaks, in order tomembers are welcome. support the society’s work both nationally and locally.MS Society’s 60th Anniversary! In 2013, the MS Society turns 60 It’s not too late to request a pack and get involved. years old. It was founded by Mary Please contact or phone and Richard Cave to support and 0845-4811577. Supporters interested in hosting a Cake empower people affected by MS. Break can register to receive a free fundraising pack at The MS Society will be celebrating achievements of everyone involved in theorganisation and will be looking forward to anexciting future. Carers Week 2013 (10th–16th June)Rather than take resources away from vital Registration for Carers Week events opens in February. Ifresearch and support, celebrations will be you can’t put on an event, why not get in touch with yourintegrated into existing events. MS Week, local carers centre to find out what else is happening nearannual meetings, national fundraising events you? Visit the MS Awards will all have extra “60th local-service to find them, or tosparkle”. read more about the national campaign.If you have any ideas about how to makefundraising events that extra bit special thenplease email them 19 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  20. 20. Recipe from Lubna Lubna, an Asian MS member since 2005, has been kindly sharing her delicious recipes with Asian MS. She was diagnosed with MS following an MRI scanKing Prawn Curry in 1991, with symptoms having included optic neuritis and fatigue. While she feels that she’s slowed down a great deal as she’s grown older, sheIngredients:8oz /250g shelled raw king prawns is still able-bodied and considers herself to be very2 medium onions, finely chopped lucky.3 tbsp sunflower oil3 medium tomatoes, finely chopped She joined Asian MS after she met Shiv (Asian MS1 tsp garlic paste Treasurer) at MS National Centre. He was the first1 tsp ginger paste Asian person that she’d met who also had MS. She½ tsp turmeric has previously served on the Asian MS committee.1 tsp cumin (zeera/jeera) powder1 tsp coriander (dhaniya) powder1 tsp red chilli powder½ tsp salt or to taste3 tbsp fresh coriander, chopped ASIAN MS STILLMethod: NEEDS YOUR HELP!-De-vein the prawns and sprinkle with turmericand mix well so that all the prawns are coated, As we expand, Asian MS is in desperate need ofthen set aside. more volunteers to help us to continue offering our support and services. Communication with our -Heat the oil in a pan and membership is of utmost importance to us and we add the chopped onions are still looking to appoint a Membership and fry until golden Secretary and a Website Editor. brown. The Membership Secretary would be mainly-Add the spices and stir for a few seconds, put responsible for dealing with correspondence andin the tomatoes and fry for a few minutes until membership issues (such as maintaining thethe ingredients have blended well together, membership database).add a little water and simmer until thetomatoes have softened. The Website Editor would be in charge of updating the Asian MS website, particularly uploading e--Add the prawns and the salt and fry briskly for editions of the Newsletter and Asian MS news.3-4 minutes; you should be left with a thick Please contact ifsauce. you are interested in either post and would like further information. Emails should be addressed to-Garnish with the chopped coriander. Vinnie Kochhar.Serve with plain boiled rice.Page 20 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  21. 21. General InformationInformation New editions/modifications for MS SocietyHearing factsheet. Second edition October 2012 publicationsAlthough not a common symptom, hearing  Benefits and MS (MS Essentials 09)problems can sometimes be caused by MS. They - Eighth edition, October 2012might, for example, come on during a relapse  Claiming DLA (MS Essentials 13) -and improve once the relapse is over. But some Ninth edition, October 2012people do experience longer lasting changes to For a list of all the MS Society’s keytheir hearing. This is available for download only. publications showing the latest editions and revisions visit the website:Financial assistance are two grant funds specifically for carers resources/key-publications or call 0300• Young Carers Fund 1000 801.• Carers Opportunities Fund.There is also support for carers through the To contact the MS Society InformationShort Breaks and Activities Fund. Carers can Team: Email to this for funding towards short breaks or call 020 8438 0799 (weekdays 9am-and holidays. 4pm)Find out more from the Grants Team on 0208438 0700 or or visitthe grants pages on the website. ***********************************If you live in Scotland, please call 0131 335 4050or email If you would like a copy of the MS Society’s latest MS booklet, which hasEmotional support been translated into 12 languagesThe MS Helpline is available to give free and including Bengali, Farsi, Gujarati,confidential advice and support to anyone Hindi, Punjabi & Urdu, please contactaffected by MS from 9am-9pm, Monday- Friday. Saher Usmani on 0208 438 0856 orThe helpline number is freephone 0808 800 Please specify if you would like to speak They are also available on USB stick for a small fee.with someone from Asian MS and you will be ***********************************directed to one of our support officers. REMEMBER! Please let Asian MS know if you would like to submit a nomination for the MS Society Awards 2013, as we will be able to offer help and support when filling out the nomination forms!Page 21 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  22. 22. LATEST RESEARCH & MS IN THE NEWSSimple eye scan can reveal extent of Multiple Sclerosis Natalizumab shows promise for teens with multiple sclerosis may restore diseased MS brain -02-natalizumab-teens-multiple- sclerosis.htmlDoes salt intake play a role in MS? Former U of A golfer with multiple sclerosis defies the odds er-U-of-A-golfer-with-multiple-Chris Wright to Become First NBA Player with Multiple sclerosis-defies-the-odds-Sclerosis 192622591.html Cancer Drug a Possible Treatmentbecome-first-nba-player-multiple-sclerosis.htm for Multiple Sclerosis, Rat StudyCommon Multiple Sclerosis Drugs Taken Together Do Not SuggestsReduce Relapse Risk s/2013/02/130221084610.htm45.htm Nottingham MS researchers infectLarge Multiple Sclerosis Patient Study Shows High Impact patients with hookwormson Work & Relationships (in the US) england-nottinghamshire-21905522sclerosis-patient-study-shows-high-impact-on-work-- Genzyme multiple sclerosis drugrelationships-195527931.html receives positive CHMP opinion inBrave multiple sclerosis sufferer Stuart scales the heights Europe http://regulatoryaffairs.pharmaceuticsclerosis-sufferer-Stuart-scales/story-18323672- al-business-detail/story.html#axzz2NRoqXpXV sclerosis-drug-receives-positive-Biogens MS pill wins US approval chmp-opinion-in-europe-250313 22 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  23. 23. FUNDRAISING FOR ASIAN MS Where do the funds go? The Myelin Repair ProjectAsian MS is funded purely by One research initiative that has recentlydonations, which are received a £1,000 donation from Asian MS isused for various the Cambridge Centre for Myelin Repair,purposes. They include which is being supported by the MS Society.grants for individuals to The first stage of the research programmehelp them attend MS- saw the identification of a drug that couldrelated events, contributions to research potentially repair myelin, which is damaged inprojects, and administration costs. people with MS. The project is now moving into a second stage where researchers will undertake pre-clinical research, with the aim of ultimately translating lab findings into a clinical trial.Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way. Donations by credit card via the internet site How to make donations by text message : Send a text message to 70070 Remember to include the subject of the text: as AMSS89 and send it with the amount you wish to donate up to a maximum of £10 If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on.You may donate with any number from £1-5, and the money will go directly to the MS Society, which will transfer the cash generated to Asian MS. You can also raise funds every time you shop through EasyFundraising: We thank you kindly in advance for your supportPage 23 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  24. 24. Useful Information General and Membership Enquiries: Website: Facebook: Twitter: 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 Asian MS is a national support group for Asians with Vinnie Kochhar – ChairMS, their carers, friends and family. We seek to increase Shiv - Treasurer awareness and dispel ignorance of MS in the Asiancommunity, as well as put fun and dignity into the lives Trishna – Newsletter Editorof Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. Mukesh - Fundraising Officer We produce online and printed information in various Rani - Publicity Officer/Support Officer languages and offer an interpreting service. MS Society Website: MS Society Helpline: 0808 800 8000 Asian MS JustGiving: MS Register: MS Trust (charity that provides information about MS): MS Therapy Centres: (an online community for younger MS’ers): MS Research Blog (run by Barts & The London Neuroimmunology Group): http://multiple-sclerosis-research.blogspot.comPage 24 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070