Asian MS Newsletter Issue 1, 2013

Issue 1 - 2013
Asian MS Newsletter VITAMIN D - The Sunshine Vitamin

Vitamin D is a vitamin that is being increasingly recognized as essential for health. We can make vitamin D through exposing our skin to sunlight or through taking supplements it is rare in foods. However, vitamin D deficiency is now known to be an epidemic worldwide, mainly as a result of our changing lifestyles - reduced sun exposure and increasing time spent indoors prevents us from making vitamin D, thus making us vitamin D deficient.
Dr. Sreeram Ramagopalan
supporting a causal role for vitamin D deficiency on MS risk. The data suggests that a large proportion of MS cases could be prevented by increasing vitamin D levels in the general population. Evidence for a treatment effect of vitamin D in modifying the course of MS is not as strong as evidence for a preventive effect. We await the data from large randomized controlled trials (the gold standard to assess if a treatment works) to assess the effect of vitamin D on relapse rate and disability. However, MS patients will benefit from vitamin D supplementation for prevention of osteoporosis and fractures, where vitamin D undoubtedly has a protective effect. This is even more important as it is now known that MS patients have a much higher risk for fractures than people without MS.
Vitamin D and MS
The notion that vitamin D was involved in the cause of MS was originally proposed to explain the geography of MS. MS risk increases with increasing latitude (the further you are from the equator) and decreasing sunshine exposure. The hypothesis gained credibility after it was shown that vitamin D has Amount of Vitamin D Needed? a potent effect on the immune system. Studies that measure vitamin D levels in the blood have shown that individuals who develop MS have lower vitamin D levels before disease onset. These studies provide perhaps the strongest evidence to date
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Vitamin D is measured in International Units (IU). Sun exposure in the midday summer sun can generate 10,000 IU within 15 minutes. However, because of the lack of sun in the UK,
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
supplementation may be the only way of obtaining adequate vitamin D. It is thought that based on current levels in the general population, adults need to be taking approximately 5,000 IU of vitamin D per day to ensure vitamin D sufficiency. You should get your levels tested to see where you stand (ask your neurologist or MS nurse). Experts suggest that people with MS use more vitamin D than people without MS and thus MS patients may need to take more than 5,000 IU of vitamin D per day- perhaps 10,000 IU. As with everything, there is the risk of toxicity of taking too much vitamin D, but there is no data at all to suggest that 10,000 IU of vitamin D per day is toxic. Supplemental vitamin D comes in two forms - D3 (the one to go for as this is the same vitamin D produced by the sun) or D2 (not normally present in the body and may have actions different to D3). ~Dr. Sreeram
Ramagopalan Dr. Sreeram Ramagopalan (Dr. Ram) is a Post-Doctoral Research Fellow at Barts and the London, working for Prof. Gavin Giovannoni. He is also a Programme Leader at the University of Oxford. He completed his undergraduate degree and doctorate at the University of Oxford, under the supervision of Prof. George Ebers. For his PhD, Dr. Ram studied the genetics and the epidemiology of MS. He is currently 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). He is a regular speaker at conferences worldwide, research days and MS Society/Asian MS events. He received an MS Society Shining Star Award in 2012, for which he was nominated by Asian MS.
Do YOU have a personal story to tell?

If you would like others to hear about your personal journey with MS then please do get in touch with us here at Asian MS. Email asianms@mssociety.org.uk
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 that they fundraise for Asian MS? There are further details in this newsletter about how to make a donation and what the money is needed for.
Deadline for the next edition of the newsletter is 31st May 2013. Please send your stories, links, photos and news to asianms@mssociety.org.uk
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A message from the Editor

On a personal note, I wanted to share with you my first challenge of 2013. I finally bit the bullet and tried my hand (or should that be feet?!) at snowboarding. The photo opposite was quite a typical position for me during my trip bottom One of our aims is to help raise awareness about MS and a way down in the cold snow but I got through the of doing this is by providing information to our members. four days and managed to make it down a slope However, developments are happening all the time and another with no broken bones. Fatigue was a real great way to stay abreast of the latest research is to attend one problem by my final day, however, my instructor of the MS Research Days that are held by neurology groups in was brilliant and hauled me up whenever I different parts of the country. We are reporting back on two in couldnt muster up the strength myself. Id say this edition one in London and one in Oxford both of which getting down the slope on that final day was 5% skill and 95% sheer determination and were invaluable sources of the latest research. stubbornness! Its something I would definitely A regular speaker at research days is Dr. Sreeram try again as a sun lover, its great to at last find Ramagopalan, who has provided us with the cover story for this something useful to do with snow! edition. With summer approaching, its important for MSers to be aware of the importance of making the most of their daily ~Trishna x dose 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 this newsletter on to anyone who may be role of Vitamin D has in MS and why supplementation may be interested Spring has finally arrived (supposedly!) and with it comes the first edition of our newsletter for 2013. As ever, this is a packed issue that we at Asian MS hope you will find useful and informative. required.
CONTENTS
-Vitamin D, The Sunshine Vitamin.p.1-2 -A message from the Editor.p.3 -WAMS (Women Against MS) Launch.p.4 -News and Happenings..p.5 -MS Research Day Reports.p.6-8 -Current Research Studies.p.9-12 -Getting away on a break.p.13 -Classifieds.p.14 -Support Scheme.p.15-16
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-General News.p.17-18 -Dates for your diary.p.19 -Recipe From Lubna; Asian MS roles p.20 -General Information.p.21 -Latest Research & MS In The News.p.22 -Fundraising For Asian MS.p.23 -Useful Information.p.24
WAMS a new group for Women Against MS

WAMS is a tailored support group that fits the needs of women affected by MS. It aims to become a valued support network based around the themes of wife, mother, daughter, sister, partner etc., and how they have overcome them.
Caring, Sharing and Empowering. Offering a listening Overall the day was a great success ear, information sharing, support and advice, it is aimed at women who have MS and who live in London and the surrounding areas. and people seemed to especially welcome the opportunity to chat
The group was launched in January 2013 at an event with Hilary and speak held in the beautiful grounds of Hampton Court Palace. I attended as a representative of Asian MS and as someone who was interested in seeing the development of a new MS support network within the London area. The day started with a chance to mingle and have some lunch. It was a good opportunity to find out what people expect from a support group, something that Asian MS can also build on. Highlights of the afternoon included talks from Stewart Long (Head of Working Locally at the MS Society), Hilary Sears (Chairman of the MS Society) and Jo Johnson (author of Shrinking the Monster). https://www.facebook.com/pages/W
Jo Johnson talks about how to cope with MS
to her about where the MS Society could improve its services for members. Im sure
Hilary Sears - Chair of the MS Society
WAMS will go from strength to strength, particularly if the momentum that was built up during the launch can be maintained!
~Trishna (Asian MS Newsletter Editor)

WAMS: http://www.mssociety.org.uk/nearme/localservices/women-against-ms
The day ended with speed networking - a chance to meet
omen-Against-MS-LondonUK/147356341995217?ref=ts&fref=ts Shrinking the Monster: http://www.mssociety.org.uk/msresources/shrinking-monster
people who we didnt already know. It was a great way to meet other women with MS and find out the challenges they have faced in their various roles as a
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NEWS AND HAPPENINGS

Ila is shortlisted as Volunteer of the Masons Valentines Ladies Festival Year
Every year the Royal Borough of Windsor and Maidenhead recognises the work carried out by volunteers in the community, and Asian MS Committee member Ila Gangotra was nominated for her work with the Windsor and Maidenhead Community Forum and the Hindu Society of Maidenhead. Asian MS would like to congratulate her on this wonderful honour. At the awards ceremony Ila met Sophie Christiansen, the gold medal-winning Paralympian and even got to hold her medals from London 2012!
On 16th February 2013 Nayna and I hosted a Valentine Ladies Festival at The Hilton, Milton Keynes. There were some 85 people present, including Asian MS Committee member Ila Gangotra and her husband Ramesh. The evening was most enjoyable. The Ladies Festival is an annual event amongst Masons and I, as the current Master and President of the Festival, held this event not only to thank all the ladies for their patience and from whom we are away during our meetings throughout the year, but also to show our appreciation for their hard work and understanding.
Trishna makes last five for MS Inspiration Award

Your very own Newsletter Editor was very honoured to have been nominated for the MS Inspiration Award at the Oxford Research Day that was run by the Oxford University Hospitals NHS Trust. I was surprised to have been nominated in the first place and was even more surprised to make the shortlist of the last five! I was nominated for the work Ive done on this very newsletter and for helping to raise awareness of MS in the Asian community, as well as my other work with MS charities, such as Shift.ms. Thank you to my nominator, I felt humbled to be placed among the other nominees, who included avid fundraisers. I thoroughly enjoy my work with MS charities and compiling this newsletter, so it was lovely to be recognised for doing something that I love!
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Kanti, Nayna and their family with Ramesh and Ila
I, being the Master of my Lodge in London, put the MS Society as my main charity together with Medical Trauma. We aimed to raise as much as possible through our Masonic members. We raised a good sum at the Festival through a raffle and auction. The final amount of funds raised will not be known until my year of office finishes at the end of September 2013.
~Kanti Kalidas, Asian MS member

Kanti was diagnosed with Primary Progressive MS in April 2010. He is a member of the Surrey branch of the MS Society, as well as being an avid supporter of Asian MS. He is heavily involved in fund raising and is also keen to raise awareness of MS within the Asian community.
Whats going on at Barts and UCL Partners

The 4th MS Research Day run by Barts and the London neurology group was held in Westminster in February and this year was the first to be run in collaboration with UCL Partners, an academic health science centre located in London. This meant that the speakers list was greatly expanded and a wider range of subjects was being discussed. member Dr. Sreeram Ramagopalan, as well as Professor Sandra Amor, Professor David Baker (who has spoken at an Asian MS event before), Dr. Jeremy Chataway, Dr. Ruth Dobson and Dr. Ahmed Toosey, to name but a few.
Lifestyle discussions included cognition, the The 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 and medical professionals to discuss lifestyle issues and the If you would like to see presentations from science behind MRIs and the pathology of MS running in the day, please visit: parallel. A new feature was a Question Time discussion that was filmed behind closed doors and that would be http://www.youtube.com/channel/UCyTAs made available on the Barts MS Research blog. More about 55E__NlUmDeWs66Jeg Question Time later, as it involved Asian MS committee member Ila Gangotra, as well as various MS experts and Keep up to date with when the next researchers. Research Day is happening by visiting the blog on a regular basis! For previous Research Day videos see the following links: http://www.youtube.com/playlist?list=PL A05CD7CD6704250D (2012) As always, the list of presentation subjects was wideranging and offered attendees an insight into the latest developments in MS research. They included: spasticity treatments, energetics in MS, the eye as a window to the MS brain, the role of MRIs as a tool in neuroprotective and neurorestorative MS trials, virology and an update on the Charcot project, how to make lumbar punctures less painful for MS research, an update on clinical trials for progressive MS, bone health in MSers, public engagement, and an update on genetics and MS. Speakers included Asian MS
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http://www.youtube.com/playlist?list=PL A05CD7CD6704250D (2011) http://www.youtube.com/playlist?list=PL C5BBC29967E2E7E9 (2010)
Knowledge is Power
by Ila Gangotra
Some of the topics covered were citizen understanding gained through experience or study petitions to the FDA, the question of approvals to use already available drugs in (reference: http://www.thefreedictionary.com/knowledge). people with MS, Since my MS journey began, knowledge has been a focal point of every decision that has been considered or made. stem cell With two daughters that have the condition, it has always therapies, liberation been of utmost importance to me that they are able to make therapy, informed choices regarding treatment and symptom vitamin D management. Thats why I take advantage of every opportunity I can to expand my knowledge base whenever The Question Time Panel as a cause possible. or an effect of MS, healthy lifestyles influencing I have recently had the opportunity to attend and participate disease course, and whether we will see a in two excellent research events. cure for MS in the next 10-15 years.
Knowledge (noun) - familiarity, awareness, or
I was honored to be invited by Professor Gavin Giovannoni and Alison Thomson to be a lay member on the Question Time panel during the 4th Annual Research Day run by Barts and the London Group. Questions had been submitted by readers of Team Gs blog and they were to be addressed and answered by a panel made up of neurologists, researchers and me. I was very nervous to begin with, however Alison Thomson (Designer and Researcher at Queen Mary, University of London), who was organizing the event, quickly put me at ease and introduced me to the Jargon Bell. The bell was given to me to press whenever I didnt understand something that was being said by the professionals on the panel, as the likelihood was that if I didnt understand it then nor would some of the viewers! As it happens, I didnt need to use it as much as I thought I would, as all the experts were able to explain things clearly and in an easy to understand way. The panel was chaired by Dr. Gareth Pryce and other panel members were Prof. Gavin Giovannoni, Dr. Jeremy Chataway, Dr. Ruth Dobson and Prof. David Baker.
I would highly recommend people to watch the videos that are now available via YouTube at: http://www.youtube.com/channel/UCyTAs 55E__NlUmDeWs66Jeg It is a great opportunity to really delve into the world of MS research and hear some of the countrys top experts speak about the issues that are foremost in the minds of MSers. By the end of the session I definitely felt more knowledgeable and it was a real privilege to have been able to participate in the initiative!
A few weeks later, I also attended the Oxford Research Day, which was held by the Oxford University Hospitals NHS Trust. This was a good chance to get a more rounded picture of what is going on in the world of MS
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research, as it would add to what Id already learned from the Barts and UCLP Research Day in February.
(continued from p.7)
Research Day A Personal View
Church House Conference Centre was originally built in 1887 to commemorate the Golden Jubilee of Queen Victoria. Many years later on 2nd February 2013, I visited for the first time. This was the 4 th annual MS Research Day run by Barts and the London Group. As The day was filled with a series of presentations and after lunch there was invited guests of MS patients, family members and friends gathered in the Circular Conference Hall, the circular ceiling bore the words, a dedicated space for a question and 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 a off with award presentations for Oxford home of unfading splendour, wherein they rejoice with gladness MS Research Young Investigator 2013 evermore." A beautiful sentiment to what lay ahead.
and MS Inspiration 2013.
The presentations included: Identifying begins with the basics, What is MS? A variety of specialists are multiple sclerosis stages with blood invited to talk about progress in their tests and computer learning (Dr. own research. Issues on medication James Larkin), Genetic-pathologic and disease progression are correlations in MS (Dr. Gabriel De addressed and the floor is open to questions from the audience and, Luca), Amiloride Clinical Trial in Optic inevitably, to competing researchers. Neuritis (ACTION) (Dr. Calliope The MS patients or MSer's, as some Dendrou), MRI Research in MS (Dr prefer to be called, are invited to practical sessions throughout the Lucy Matthews), and New Emerging day. This open atmosphere allows everyone to enjoy the day at their Therapies in MS (Dr. Andrew Weir).
own pace.
For the Research Day has but one purpose - to enlighten. The day
The day was excellent, with lots of time for questions. Im sure it will go from strength-to-strength each year. It gives people an opportunity to chat with other MS patients and researchers, as the research process is a two-way dialogue.
~Ila Gangotra is an Asian MS committee member who has a particular interest in MS research and developments
Every year, new and interesting information comes to light. One piece of research suggests that MS could be related to endogenous retroviruses - a viral element that has integrated into the DNA and which, for the most part, remains dormant for millions of years. So if these viruses can somehow become active and lead to conditions such as MS, it would change our understanding of genetics as a whole. Another integral part of the Research Day was to help attract volunteers for new research studies. The day helps to provide potential volunteers with more information and strengthen their knowledge, to help them to make informed choices.
~Sarabjit Thethy completed a nursing degree and is currently a 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.
If you would like more information on the trials being conducted by this group, please contact the MS Trials Office on 01865-231869 or at mstrialsinfo@ndcn.ox.ac.uk
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A CHANCE TO GET INVOLVED Mindfulness based CBT for PPMSers and SPMSers
This pilot study, being run at Kings College London, aims to see whether a mindfulness programme could be beneficial for people with progressive forms of MS. Mindfulness is a technique that helps with distressing emotions, by paying attention to the present, utilising meditation methods. Participants will be randomly allocated to a waiting list group or mindfulness group. The mindfulness group will have to attend 8 onehour sessions (on per week) that will be delivered online via group-based video conferencing. Mindfulness participants will be given the option of having two MRI scans one before and one after the course that will explore whether the course results in any brain changes. Participants would be asked to practice mindfulness meditation on a regular basis, using CDs that will be provided. They will also be required to fill in 10 questionnaires on three occasions each time they will take around an hour to complete. You can participate if you have Primary Progressive or Secondary Progressive MS, have NOT received any formal mindfulness methods training, are NOT receiving any other psychological treatments (currently), you do not have severe concentration problems, and you are NOT highly distressed. Participation runs between November 2012 and June 2013. For more information contact Angeliki Bogosian at angeliki.bogosian@kcl.ac.uk or 020-718 80190.
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THE MS REGISTER Have you signed up yet?

The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. You can take part by completing a series of simple online questionnaires. You will then be reminded every three months to record any changes in your condition in the lifestyle, symptoms and medication sections. If you are over the age of 18 and living in the UK, with a confirmed diagnosis of MS made by a consultant neurologist, you are eligible to take part in this study. There are also a small number of pilot sites that are collecting clinical information: Royal Victoria Hospital, Belfast; Western General Hospital, Edinburgh; St. Marys Hospital, London; Queens Medical Centre, Nottingham; and Morriston Hospital, Swansea. http://www.ukmsregister.org
KEEP YOUR EYE OUT! The MS Society maintains a list of research studies and clinical trials that are currently recruiting participants. If you are interested please go to: http://www.mssociety.org.u k/ms-research/get-involvedin-research
A CHANCE TO GET INVOLVED

Experiences & perceptions of healthcare services from people with MS and their clinicians This study, being run by the University of Manchester, aims to collate the experiences of MSers of health care services and looking into what they believe has been helpful or needs improving. The findings will be presented to health care services, in an attempt to make the experiences for people with MS better and potentially improve patient care. Participants will be required to chat to a researcher about their experiences of health care services for MS, as well as their health care needs in terms of psychological/emotional and physical symptoms. This will last for around an hour and can occur at your house, work or at the University of Manchester. Please note that organisers of the study are unable to reimburse travel expenses. A small group of participants will be invited to attend a follow-up interview six and twelve months after the original interview. Participants can attend the original interview without having to participate in the additional interviews.
Get involved with your local Healthwatch

From April 2013 a new patient champion body, Healthwatch, will be launched in every local authority across England. Each local Healthwatch will be responsible for collecting views and experiences of health and social care services from patients, carers and all members of the public. Theyll be responsible for making sure your views are listened to. The MS Society is aware that there are lots of gaps in MS services across the country. If you have concerns about MS health and care services in your area, get involved with your local Healthwatch and make your voice heard. This is a real opportunity to put MS on the map and your chance to address local issues. If youre already active in your local Healthwatch the MS Society, and Asian 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 at campaigns@mssociety.org.uk or on living in the Greater Manchester region. It is running between September 2012 and 020 8438 0700 and/or Asian MS at September 2013.
asianms@mssociety.org.uk
For more information contact: Abigail Methley at abigail.methley@postgrad.manchester.ac.uk or on 07950 619 368.
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For more information on Healthwatch visit www.healthwatch.co.uk
Personal Experiences of People with MS An This study, being run by the Institute of Explorative Study Psychiatry at Kings College London, aims to This study, being run by the explore pain in MS from the patients 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 with different stages of MS. Study findings will their pain. hopefully help to improve health services for The study seeks to find out about your people with MS and will be shared amongst experiences of health care researchers, clinicians, people affected by MS, services that have tried to help policy-makers and academics. you with your pain; whether it Participants would be asked for a face-to-face was helpful or not and what interview about their experiences of MS, needs to be improved, in your opinion, in the including what their thoughts and feelings have future. The findings will be shared with health been at different stages, how you have made care services and researchers to improve the decisions and how you have obtained care service experience for people with MS. It information. The interviews will probably last for will also aid researchers in developing more around an hour and will be audio recorded. focused questions for a bigger postal survey study that starts in June 2013. To take part, you need to be living in the UK, have MS and be over 18. Recruitment for participants is happening now and the interview can be arranged for a time and date that is convenient to you. The exact date for recruitment is unknown, however, it is predicted to be around June 2013. The interview will be arranged to take place in a venue convenient to you. Participants will be interviewed by a researcher, either over the telephone, at work, at home or at a Kings College London building. Unfortunately, travel expenses cannot be reimbursed. Interviews will last for around 30-60 minutes.
Tell me about your pain... Pain in MS (PiMS study)
Participants need to have a confirmed MS For more information please contact Abi Eccles diagnosis, be over 18 and experience some at abi.eccles@phc.ox.ac.uk 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 anthony.harrison@kcl.ac.uk or call/text 07936-448926 leaving your name and a contact number.
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A Flourishing Life: Single Women Living Well with MS This study, being run by the University of East London, aims to look at the experiences of single women living with MS. A lot of previous research concentrates on MS as an illness and has neglected people who are living successful, productive and happy lives whilst living with the challenges of MS. Hopefully, the study results will form the basis for more research on psychosocial wellbeing of people with MS and lead to the development of interventions to support people with MS. Participants will be interviewed face-to-face and the information they provide will be analysed. All data will be made anonymous and will be securely stored. Interviews will last for around 40-60mins and will take place in North Kent and London. You can take part if you are a single female who is over 18 and who has had a confirmed MS diagnosis for at least two years. The study is running between February 2013 and September 2013. For more information contact Jane Stuchbury by email at jane_stuchbury@hotmail.co.uk
MS Society launches a pioneering new research strategy

The MS Society has launched a new research strategy, that will be effective from 2013 to the end of 2017. The strategy aims to ensure that the best, most relevant research is funded, which will bring new treatments through to people with MS as quickly as possible. The strategy will lead to a much more targeted approach to funding research. The MS Society hopes that this will ensure its research programme continues to bring life-changing benefits to people affected by MS. Priority areas will include: Identifying and testing treatments that can slow or stop progression in people with MS (including neuroprotective and immune-based therapies) Developing ways to predict the course of MS and preventative and risk reduction strategies for MS Increasing our understanding of myelin repair with an emphasis on translating our current knowledge into treatments The MS Society has also established a Priority Setting Partnership, the James Lind Alliance. This project will establish what the MS research priorities are for health professionals and people affected by MS. The Society wants to produce a list of the top 10 priorities that emerge from the exercise, in 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: www.mssociety.org.uk/jla
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MS Activity Weekend
Friday 24th - Monday 27th May 2013 For people with MS, their families and friends Choose from a variety of activities or relax in the tranquil setting of the beautiful Kielder Water & Forest Park. 3 Nights 317 Includes accommodation, activities and all meals Or book the Respite Care Package (over 18s) 3 Nights 488 Includes care, accommodation, activities and all meals
Supported short breaks A new partnership with Carers Trust and local Crossroads Care schemes
People affected by MS who live in England and Wales can now access care and support during their short breaks and holidays, thanks to a new partnership between the MS Society and Carers Trust. Care will be provided by trained care support workers from local Crossroads Care schemes, which are network members of Carers Trust. They will come to wherever you are staying, to provide that support for you. Having someone else take over the caring responsibilities for a while means that families can go away together or people with MS can travel independently safe in the knowledge that the main family carer will get a chance to rest and recharge their batteries. 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 Anglia.
To book call 01434 250232 or email enquiries@calvertkielder.com
To find out more about the Calvert Trusts Exmoor, Kielder and 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 www.calvert-trust.org.uk
8438 0805 or email shortbreaks@mssociety.org.uk.
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: http://www.disabledholidayinfo.org.uk/index.htm Even if you dont 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!
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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 mhatte@mssociety.org.uk.
Amberwood Holiday Lodge

West 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 suite shower room, a twin bedded room, bathroom, and lounge/kitchen area with double fold-out sofa bed. Bookings can be made by calling Richard Smith on 07709 235 729. (Please leave a message if 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 members
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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 cant 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 participants 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 susmani@mssociety.org.uk or call her on 020 8438 0856.
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Example of a Support Plan

.
Name: Felicity Farmer (This is a lady that has small children, and works part-time. She has friends and family close by to support her)
What help do you think How often you will need? do you think youll need this support per day / week? Who is your 1st choice who can provide this support for you? Who is the alternative person who can provide this support if your 1st choice isnt available? How much money to say thank you / pay for support?
Someone to drive the Twice a children to school day and home again
My friend My friend 10 towards petrol Donna, as Tracey her children go to the same school Shopping 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 hers Travelling to and Twice per My My dad 10 towards petrol from work if I cannot day colleague drive Philip lives near by and I can share a lift with him To save you looking for contact numbers when you need them, why not list them here so 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 222222
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GENERAL NEWS
MS SOCIETY AWARD NOMINATIONS NOW OPEN
Nominations are now open for the MS Society Awards 2013. These awards highlight the achievements of people in the world of MS those living with the condition, their families, carers and MS professionals. There are ten categories: Carer, Digital Media (new!), Employer, Fundraiser, Media, Professional, Researcher, Volunteer, Young Person, and MS Inspiration of the Year (given in the gift of the MS Society).
MS Matters gets a new look!

If youre a member of the MS Society then you will already be familiar with the MS Matters magazine. In summer-2013, a newlook MS Matters will be launched, which will differ according to the country in which the recipient lives. Magazines being sent to Northern
Ireland, Wales and Scotland will Anyone can nominate so if you know of someone who deserves to be recognised then get nominating! If you would feature four to eight pages of nationlike any help or support to make your nomination, please specific content at the front, and contact Vinnie Kochhar at Asian MS on stories from across the UK asianms@mssociety.org.uk throughout. Therefore, the NI The deadline for all nominations is 19th April 2013. Winners Newsletter, MS Linc and MS will be announced at an invitation-only awards ceremony Connect will stop being produced. that will take place on 17th October. For more information please email mssocietyawards@mssociety.org.uk or go The last issues of those will be to http://www.mssociety.org.uk/ms-events/2013/01/msdelivered in the spring. society-awards-2013 Currently, there are no plans to Asian MS member Amrit Gajjar was a previous winner of significantly change the version of the Carer of the Year Award. You can see him here MS Matters that is received in collecting his award in 2011. England, following an MS Society survey that showed very high satisfaction among England-based members.
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GENERAL NEWS
MS Register launches inaugural newsletter
The first newsletter from the MS Register is now available for its participants. Those running the Register 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 Registers progress since it was started, the newly published research, the work completed after the collection of data and the events that the MS Register will be attending in 2013. They are keen for feedback so if you are part of the Register and want to share your experiences, then they are interested in hearing from you so that you can be included in the next newsletter. There will also be a Twitter and Facebook campaign. You can access the newsletter by clicking on the link below: http://www.ukmsregister.org/Newsletter/Re ad/4885/1 Would you be interested in becoming a regional contact for Asian MS? Wed love to hear from you as we want to build a network of support for Asian MSers around the country. Please contact us at asianms@mssociety.org.uk for further information.
MS In the Media
Asian MS Committee members Sanjay Chadha and myself (pictured below) were featured in a documentary produced by Priyal Raja.
Shiv
Sanjay
The film was made by a person with MS, starred people with MS and aimed to provide information for people with and without MS about how having a positive attitude can be beneficial. All those involved were determined to show that MS will not get the better of them, Jab Tak Hai Jaan, Jab Tak Hai Jaan...! Priyal is doing a filmmaking degree at the University of West London in Ealing. I met him a few years ago with his parents and sister at an Asian MS event in Slough, which launched the Societys MapMS campaign (http://www.mapms.org.uk). Priyal is an editor of the online magazine Desiblitz.com, where he does articles on whats going on in Bollywood and also interviews Bollywood celebrities. He is 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 Bhachan, Arjun Rampal and Ajay Devgn. Priyal is also a big cricket fan and is into Indian music. ~Shiv Sharma (Asian MS Treasurer) You can view the video on YouTube by clicking the following link: http://www.youtube.com/watch?v=f6zv8uzb H7o&feature=youtu.be
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DATES FOR YOUR DIARY

Asian MS Annual Meeting
The Asian MS Annual Meeting has come around again and will be held at MS National Centre in Cricklewood, London, in May 2013. The Annual Meeting is a chance to elect your committee for the year, hear some fantastic speakers and have an opportunity to meet other Asian MS members and people involved in the MS Society. There is always lots of food, drink and chat. Whether youre a new member or a long-standing one, wed love to see you down there. More details, including the exact date and time, will be sent out to members in an email bulletin so keep your eyes peeled! Members and nonmembers are welcome.
MS Week 2013
This year, MS Week will take place between 29th April and 5th May. This year, the MS Society will be raising awareness about the challenges MSers face in accessing the right support and healthcare at a local and national level. There will be lots of ways to get involved and to raise funds to help support the MS Society. You can also use the opportunity to help raise awareness of MS within the Asian community and fund raise for Asian MS! If you need help to set up any events, then please contact Mukesh Jethwa, the Fundraising Officer for Asian MS, at asianms@mssociety.org.uk There will also be information about MS Week appearing on the MS Societys website: http://www.mssociety.org.uk/ms-events/2012/11/msweek-2013
Cake Break 2013

This year, the MS Society is hoping to raise around 350,000 through its popular cake breaks, in order to support the societys work both nationally and locally. Its not too late to request a pack and get involved. Please contact cakebreak@mssociety.org.uk or phone 0845-4811577. Supporters interested in hosting a Cake Break can register to receive a free fundraising pack at www.mssociety.org.uk/cakebreak
MS Societys 60th Anniversary!

In 2013, the MS Society turns 60 years old. It was founded by Mary and Richard Cave to support and empower people affected by MS. The MS Society will be celebrating the achievements of everyone involved in the organisation and will be looking forward to an exciting future. Rather than take resources away from vital research and support, celebrations will be integrated into existing events. MS Week, annual meetings, national fundraising events and the MS Awards will all have extra 60th sparkle. If you have any ideas about how to make fundraising events that extra bit special then please email them to:
60years@mssociety.org.uk
Carers Week 2013 (10th16th June)

Registration for Carers Week events opens in February. If you cant put on an event, why not get in touch with your local carers centre to find out what else is happening near you? Visit www.carers.org/carersservices/find-yourlocal-service to find them, or www.carersweek.org to read more about the national campaign.
Page 19
Recipe from Lubna

King Prawn Curry Ingredients: 8oz /250g shelled raw king prawns 2 medium onions, finely chopped 3 tbsp sunflower oil 3 medium tomatoes, finely chopped 1 tsp garlic paste 1 tsp ginger paste tsp turmeric 1 tsp cumin (zeera/jeera) powder 1 tsp coriander (dhaniya) powder 1 tsp red chilli powder tsp salt or to taste 3 tbsp fresh coriander, chopped Method: -De-vein the prawns and sprinkle with turmeric and mix well so that all the prawns are coated, then set aside. -Heat the oil in a pan and add the chopped onions and fry until golden brown. -Add the spices and stir for a few seconds, put in the tomatoes and fry for a few minutes until the ingredients have blended well together, add a little water and simmer until the tomatoes have softened. -Add the prawns and the salt and fry briskly for 3-4 minutes; you should be left with a thick sauce. -Garnish with the chopped coriander. Serve with plain boiled rice.
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 scan in 1991, with symptoms having included optic neuritis and fatigue. While she feels that shes slowed down a great deal as shes grown older, she is still able-bodied and considers herself to be very lucky. She joined Asian MS after she met Shiv (Asian MS Treasurer) at MS National Centre. He was the first Asian person that shed met who also had MS. She has previously served on the Asian MS committee.
ASIAN MS STILL NEEDS YOUR HELP!

As we expand, Asian MS is in desperate need of more volunteers to help us to continue offering our support and services. Communication with our membership is of utmost importance to us and we are still looking to appoint a Membership Secretary and a Website Editor. The Membership Secretary would be mainly responsible for dealing with correspondence and membership issues (such as maintaining the membership database). The Website Editor would be in charge of updating the Asian MS website, particularly uploading eeditions of the Newsletter and Asian MS news. Please contact asianms@mssociety.org.uk if you are interested in either post and would like further information. Emails should be addressed to Vinnie Kochhar.
Page 20
General Information
New editions/modifications for MS Society Information Hearing factsheet. Second edition October 2012 publications Although not a common symptom, hearing Benefits and MS (MS Essentials 09) problems can sometimes be caused by MS. They - Eighth edition, October 2012 Claiming DLA (MS Essentials 13) might, for example, come on during a relapse Ninth edition, October 2012 and improve once the relapse is over. But some people do experience longer lasting changes to For a list of all the MS Societys key their hearing. This is available for download only. publications showing the latest editions and revisions visit the website: Financial assistance www.mssociety.org.uk/msThere 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 Information Short Breaks and Activities Fund. Carers can Team: Email infoteam@mssociety.org.uk apply to this for funding towards short breaks or call 020 8438 0799 (weekdays 9amand holidays. 4pm) Find out more from the Grants Team on 020 8438 0700 or grants@mssociety.org.uk or visit the grants pages on the website. *********************************** If you live in Scotland, please call 0131 335 4050 or email grantsscotland@mssociety.org.uk If you would like a copy of the MS Societys latest MS booklet, which has been translated into 12 languages Emotional support including Bengali, Farsi, Gujarati, The MS Helpline is available to give free and Hindi, Punjabi & Urdu, please contact confidential advice and support to anyone Saher Usmani on 0208 438 0856 or affected by MS from 9am-9pm, Monday- Friday. susmani@mssociety.org.uk The helpline number is freephone 0808 800 8000. 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!
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LATEST RESEARCH & MS IN THE NEWS

Simple eye scan can reveal extent of Multiple Sclerosis http://www.bbc.co.uk/news/health-20836082 Skin 'may restore' diseased MS brain http://www.bbc.co.uk/news/health-21372793 Does salt intake play a role in MS? http://www.mssociety.org.uk/ms-research/researchblog/2013/03/does-salt-intake-play-role-ms Chris Wright to Become First NBA Player with Multiple Sclerosis http://www.happynews.com/news/3122013/chris-wrightbecome-first-nba-player-multiple-sclerosis.htm Common Multiple Sclerosis Drugs Taken Together Do Not Reduce Relapse Risk http://www.sciencedaily.com/releases/2013/03/1303111016 45.htm Large Multiple Sclerosis Patient Study Shows High Impact on Work & Relationships (in the US) http://www.prnewswire.com/news-releases/large-multiplesclerosis-patient-study-shows-high-impact-on-work-relationships-195527931.html Brave multiple sclerosis sufferer Stuart scales the heights http://www.thisisnottingham.co.uk/Brave-multiplesclerosis-sufferer-Stuart-scales/story-18323672detail/story.html#axzz2NRoqXpXV Biogen's MS pill wins US approval http://www.pharmatimes.com/Article/13-0327/Biogen_s_MS_pill_wins_US_approval.aspx
Page 22
Natalizumab shows promise for teens with multiple sclerosis http://medicalxpress.com/news/2013 -02-natalizumab-teens-multiplesclerosis.html Former U of A golfer with multiple sclerosis defies the odds http://www.azfamily.com/news/Form er-U-of-A-golfer-with-multiplesclerosis-defies-the-odds192622591.html Cancer Drug a Possible Treatment for Multiple Sclerosis, Rat Study Suggests http://www.sciencedaily.com/release s/2013/02/130221084610.htm Nottingham MS researchers infect patients with hookworms http://www.bbc.co.uk/news/ukengland-nottinghamshire-21905522 Genzyme multiple sclerosis drug receives positive CHMP opinion in Europe http://regulatoryaffairs.pharmaceutic al-businessreview.com/news/genzyme-multiplesclerosis-drug-receives-positivechmp-opinion-in-europe-250313
FUNDRAISING FOR ASIAN MS

Where do the funds go? Asian MS is funded purely by donations, which are used for various purposes. They include grants for individuals to help them attend MSrelated events, contributions to research projects, and administration costs. The Myelin Repair Project One research initiative that has recently received a 1,000 donation from Asian MS is the Cambridge Centre for Myelin Repair, which is being supported by the MS Society. The first stage of the research programme saw the identification of a drug that could potentially repair myelin, which is damaged in 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 justgiving.com:

www.justgiving.com/AsianMS
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:
http://www.easyfundraising.org.uk/causes/asianms
We thank you kindly in advance for your support

Page 23
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
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. Vinnie Kochhar Chair Shiv - Treasurer Trishna Newsletter Editor Mukesh - Fundraising Officer Rani - Publicity Officer/Support Officer
MS Society Website: http://www.mssociety.org.uk MS Society Helpline: 0808 800 8000 Asian MS JustGiving: www.justgiving.com/AsianMS 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
Page 24

Asian MS Newsletter Issue 1, 2013

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Asian MS Newsletter Issue 1, 2013

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Issue 1 - 2013

Asian MS Newsletter VITAMIN D - The Sunshine Vitamin

Do YOU have a personal story to tell?

A message from the Editor

WAMS a new group for Women Against MS

~Trishna (Asian MS Newsletter Editor)

The day ended with speed networking - a chance to meet

omen-Against-MS-LondonUK/147356341995217?ref=ts&fref=ts Shrinking the Monster: http://www.mssociety.org.uk/msresources/shrinking-monster

NEWS AND HAPPENINGS

Trishna makes last five for MS Inspiration Award

Kanti, Nayna and their family with Ramesh and Ila

~Kanti Kalidas, Asian MS member

Whats going on at Barts and UCL Partners

http://www.youtube.com/playlist?list=PL A05CD7CD6704250D (2011) http://www.youtube.com/playlist?list=PL C5BBC29967E2E7E9 (2010)

Knowledge (noun) - familiarity, awareness, or

Research Day A Personal View

and MS Inspiration 2013.

THE MS REGISTER Have you signed up yet?

A CHANCE TO GET INVOLVED

Get involved with your local Healthwatch

For more information on Healthwatch visit www.healthwatch.co.uk

A CHANCE TO GET INVOLVED

Tell me about your pain... Pain in MS (PiMS study)

A CHANCE TO GET INVOLVED

MS Society launches a pioneering new research strategy

You can find out more by visiting: www.mssociety.org.uk/jla

To book call 01434 250232 or email enquiries@calvertkielder.com

Amberwood Holiday Lodge

Example of a Support Plan

MS Matters gets a new look!

DATES FOR YOUR DIARY

Cake Break 2013

MS Societys 60th Anniversary!

Carers Week 2013 (10th16th June)

Recipe from Lubna

ASIAN MS STILL NEEDS YOUR HELP!

LATEST RESEARCH & MS IN THE NEWS

FUNDRAISING FOR ASIAN MS

Donations by credit card via the internet site justgiving.com:

How to make donations by text message :

We thank you kindly in advance for your support

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