Asian ms 2013 issue 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

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.

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 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

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.

Amount of Vitamin

D Needed?

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,

Dr. Sreeram Ramagopalan


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

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 [email protected]

FUNDRAISING FOR ASIAN MS

If you are interested in

fundraising for Asian MS, please

contact our fundraising officer, Mukesh

Jethwa on [email protected]

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 [email protected]

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.

mailto:[email protected]




A message from the Editor……

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.

One of our aims is to help raise awareness about MS and a way

of doing this is by providing information to our members.

However, developments are happening all the time and another

great way to stay abreast of the latest research is to attend one

of the MS Research Days that are held by neurology groups in

different parts of the country. We are reporting back on two in

this edition – one in London and one in Oxford – both of which

were invaluable sources of the latest research.

A regular speaker at research days is Dr. Sreeram

Ramagopalan, who has provided us with the cover story for this

edition. With summer approaching, it’s important for MS’ers to

be aware of the importance of making the most of their daily

dose of sunshine. However, with the British weather like it is,

hopefully Ram is able to help our members understand what the

role of Vitamin D has in MS and why supplementation may be

required.

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

down in the cold snow – but I got through the

four days and managed to make it down a slope

with no broken bones. Fatigue was a real

problem by my final day, however, my instructor

was brilliant and hauled me up whenever I

couldn’t muster up the strength myself. I’d say

getting down the slope on that final day was 5%

skill and 95% sheer determination and

stubbornness! It’s something I would definitely

try again – as a sun lover, it’s great to at last find

something useful to do with snow!

~Trishna x

PS. As always, please do pass this

newsletter on to anyone who may be

interested

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

-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

Caring, Sharing and Empowering. Offering a listening

ear, information sharing, support and advice, it is

aimed at women who have MS and who live in

London and the surrounding areas.

The group was launched in January 2013 at an event

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”).

The day ended with “speed

networking” - a chance to meet

people who we didn’t 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

wife, mother, daughter, sister, partner

etc., and how they have overcome

them.

Overall the day was a great success

and people seemed to especially

welcome the

opportunity to chat

with Hilary and speak

to her about where the

MS Society could

improve its services

for members. I’m sure

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/near-

me/localservices/women-against-ms

https://www.facebook.com/pages/W

omen-Against-MS-London-

UK/147356341995217?ref=ts&fref=ts

“Shrinking the Monster”:

http://www.mssociety.org.uk/ms-

resources/shrinking-monster

Jo Johnson talks about

how to cope with MS

Hilary Sears - Chair of

the MS Society

http://www.mssociety.org.uk/near-me/localservices/women-against-ms

http://www.mssociety.org.uk/near-me/localservices/women-against-ms

https://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=ts



http://www.mssociety.org.uk/ms-resources/shrinking-monster

http://www.mssociety.org.uk/ms-resources/shrinking-monster


NEWS AND HAPPENINGS

Ila is shortlisted as Volunteer of the

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!

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 I’ve 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!

Masons’ Valentines Ladies Festival

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.

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.


What’s 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.

The format of the day was similar to the 3rd MS Research

Day, with a timetable of set presentations taking place in the

main hall and two additional rooms housing researchers and

medical professionals to discuss lifestyle issues and the

science behind MRIs and the pathology of MS running in

parallel. A new feature was a “Question Time” discussion

that was filmed behind closed doors and that would be

made available on the Barts MS Research blog. More about

Question Time later, as it involved Asian MS committee

member Ila Gangotra, as well as various MS experts and

researchers.

As always, the list of presentation subjects was wide-

ranging 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 MS’ers, public engagement, and an

update on genetics and MS. Speakers included Asian MS

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

neurological exam, cannabis, symptoms,

clinical trials, and pediatric MS.

If you would like to see presentations from

the day, please visit:

http://www.youtube.com/channel/UCyTAs

55E__NlUmDeWs66Jeg

Keep up to date with when the next

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)


A05CD7CD6704250D (2011)


C5BBC29967E2E7E9 (2010)

http://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeg


http://www.youtube.com/playlist?list=PLA05CD7CD6704250D




http://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9

http://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9


Knowledge is Power

by Ila Gangotra

Knowledge (noun) - familiarity, awareness, or

understanding gained through experience or study (reference: http://www.thefreedictionary.com/knowledge). Since my MS journey began, knowledge has been a focal point of every decision that has been considered or made. With two daughters that have the condition, it has always been of utmost importance to me that they are able to make informed choices regarding treatment and symptom management. That’s why I take advantage of every opportunity I can to expand my knowledge base whenever possible. I have recently had the opportunity to attend and participate in two excellent research events. 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 G’s 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 didn’t understand something that was being said by the professionals on the panel, as the likelihood was that if I didn’t understand it then nor would some of the viewers! As it happens, I didn’t 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.

Some of the topics covered were citizen petitions to the FDA, the question of approvals to use already available drugs in

people with MS, stem cell therapies, “liberation therapy,” vitamin D

as a cause or an

effect of MS, healthy lifestyles influencing disease course, and whether we will see a cure for MS in the next 10-15 years. I would highly recommend people to watch the videos that are now available via YouTube at: http://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeg It is a great opportunity to really delve into the world of MS research and hear some of the country’s top experts speak about the issues that are foremost in the minds of MS’ers. 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

The Question Time Panel

http://www.thefreedictionary.com/knowledge




(continued from p.7) research, as it would

add to what I’d already learned from

the Barts and UCLP Research Day in

February.

The day was filled with a series of

presentations and after lunch there was

a dedicated space for a question and

answer session. The day was rounded

off with award presentations for Oxford

MS Research Young Investigator 2013

and MS Inspiration 2013.

The presentations included: “Identifying

multiple sclerosis stages with blood

tests and computer learning” (Dr.

James Larkin), “Genetic-pathologic

correlations in MS” (Dr. Gabriel De

Luca), “Amiloride Clinical Trial in Optic

Neuritis (ACTION)” (Dr. Calliope

Dendrou), “MRI Research in MS” (Dr

Lucy Matthews), and “New Emerging

Therapies in MS” (Dr. Andrew Weir).

The day was excellent, with lots of time

for questions. I’m 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

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 4th

annual MS Research Day run by Bart’s and the London Group. As

invited guests of MS patients, family members and friends gathered

in the Circular Conference Hall, the circular ceiling bore the words,

"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

home of unfading splendour, wherein they rejoice with gladness

evermore." A beautiful sentiment to what lay ahead.

For the Research Day has but one purpose - to enlighten. The day

begins with the basics, “What is MS?” A variety of specialists are

invited to talk about progress in their

own research. Issues on medication

and disease progression are

addressed and the floor is open to

questions from the audience and,

inevitably, to competing researchers.

The MS patients or MSer's, as some

prefer to be called, are invited to practical sessions throughout the

day. This open atmosphere allows everyone to enjoy the day at their

own pace.

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

[email protected]



A CHANCE TO GET INVOLVED

Mindfulness based CBT for PPMS’ers

and SPMS’ers

This pilot study, being run at King’s 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 one-hour 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 [email protected] or 020-718

80190.

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. Mary’s Hospital, London; Queen’s

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.uk/ms-research/get-involved-

in-research


http://www.ukmsregister.org/

http://www.mssociety.org.uk/ms-research/get-involved-in-research





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 MS’ers 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.

Participants must be over 18 years old and have a confirmed diagnosis of MS. They should also be living in the Greater Manchester region. It is running between September 2012 and September 2013.

For more information contact: Abigail Methley at

[email protected] or

on 07950 619 368.

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. They’ll 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 you’re 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

people. Contact Samantha Kennedy

at [email protected] or on

020 8438 0700 and/or Asian MS at

[email protected]

For more information on Healthwatch visit

www.healthwatch.co.uk




http://www.healthwatch.co.uk/



Personal Experiences of People with MS – An

Explorative Study

This study, being run by the University of Oxford, aims to

look at the experiences of people with MS,

identifying changing needs and how clinicians can provide support at

different stages of MS. Study findings will hopefully help to improve health services for people with MS and will be shared amongst researchers, clinicians, people affected by MS, policy-makers and academics.

Participants would be asked for a face-to-face interview about their experiences of MS, including what their thoughts and feelings have been at different stages, how you have made decisions and how you have obtained information. The interviews will probably last for around an hour and will be audio recorded.

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.

For more information please contact Abi Eccles at [email protected] or on 07587-142597.

‘Tell me about your pain...’ – Pain in MS

(PiMS study)

This study, being run by the Institute of Psychiatry at King’s College London, aims to explore pain in MS from the patient’s point of view. In particular, how you view pain, how you deal with it on a daily basis, how it affects you and what your views are on improving pain management and current care provided. Findings from the study will hopefully help researchers to develop new treatments aimed at improving how people with MS deal with their pain.

The study seeks to find out about your experiences of health care services that have tried to help you with your pain; whether it was helpful or not and what

needs to be improved, in your opinion, in the future. The findings will be shared with health care services and researchers to improve the care service experience for people with MS. It will also aid researchers in developing more focused questions for a bigger postal survey study that starts in June 2013.

Participants will be interviewed by a researcher, either over the telephone, at work, at home or at a King’s College London building. Unfortunately, travel expenses cannot be reimbursed. Interviews will last for around 30-60 minutes.

Participants need to have a confirmed MS diagnosis, be over 18 and experience some form of MS-related pain. It runs from March 2013 to July 2013.

For more information, please contact Anthony

Harrison at [email protected] or

call/text 07936-448926 leaving your name and

a contact number.





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 [email protected]

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


http://www.mssociety.org.uk/jla


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

To book call 01434 250232 or email enquiries@calvert-

kielder.com

To find out more about the Calvert Trust’s Exmoor, Kielder

and Lake District sites, please go to:

www.calvert-trust.org.uk

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 find out more about the service and how it

works, or to order an information leaflet, call 020

8438 0805 or email

[email protected].

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 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!



http://www.calvert-trust.org.uk/


http://www.disabledholidayinfo.org.uk/index.htm


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.

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)

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 [email protected].

Mention of advertisement by Asian MS of products or services is not

an endorsement by Asian MS or its committee members


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

[email protected] or call her on 020 8438 0856.



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 you will need?

How often do you think you’ll 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 isn’t available?

How much money to say ‘thank you’ / pay for support?

Someone to drive the children to school and home again

Twice a day

My friend Donna, as her children go to the same school

My friend Tracey

£10 towards petrol

Shopping for food

Twice a week

My friend Pam as she can do my shopping at the same time as hers

My friend Tracey

£5 bunch of flowers to say thank you

Travelling to and from work if I cannot drive

Twice per day

My colleague Philip lives near by and I can share a lift with him

My dad £10 towards petrol

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


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).

Anyone can nominate so if you know of someone who

deserves to be recognised then get nominating! If you would

like any help or support to make your nomination, please

contact Vinnie Kochhar at Asian MS on

[email protected]

The deadline for all nominations is 19th April 2013. Winners

will be announced at an invitation-only awards ceremony

that will take place on 17th October. For more information

please email [email protected] or go

to http://www.mssociety.org.uk/ms-events/2013/01/ms-

society-awards-2013

Asian MS member Amrit Gajjar was a previous winner of

the Carer of the Year Award. You can see him here

collecting his award in 2011.

MS Matters gets

a new look!

If you’re a member of the MS

Society then you will already be

familiar with the MS Matters

magazine. In summer-2013, a new-

look 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

feature four to eight pages of nation-

specific content at the front, and

stories from across the UK

throughout. Therefore, the NI

Newsletter, MS Linc and MS

Connect will stop being produced.

The last issues of those will be

delivered in the spring.

Currently, there are no plans to

significantly change the version of

MS Matters that is received in

England, following an MS Society

survey that showed very high

satisfaction among England-based

members.



http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013

http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013


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 Register’s 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

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 Society’s MapMS campaign (http://www.mapms.org.uk). Priyal is an editor of the online magazine Desiblitz.com, where he does articles on what’s 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

Would you be interested in becoming a regional contact for Asian MS? We’d love to hear from you as we want to build a network of support for Asian MS’ers around the

country. Please contact us at [email protected] for further information.

http://www.ukmsregister.org/Newsletter/Read/4885/1

http://www.ukmsregister.org/Newsletter/Read/4885/1

http://www.mapms.org.uk/

http://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.be

http://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.be



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 you’re a new member or a long-standing one, we’d 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 non-members are welcome.

MS Society’s 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: [email protected]

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 MS’ers 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 [email protected] There will also be information about MS Week appearing on the MS Society’s website: http://www.mssociety.org.uk/ms-events/2012/11/ms-week-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 society’s work both nationally and locally. It’s not too late to request a pack and get involved. Please contact [email protected] 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

Carers Week 2013 (10th–16th June) Registration for Carers Week events opens in February. If you can’t 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-your-local-service to find them, or www.carersweek.org to read more about the national campaign.



http://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013

http://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013


http://www.mssociety.org.uk/cakebreak

http://www.carers.org/carersservices/find-your-local-service

http://www.carers.org/carersservices/find-your-local-service

http://www.carersweek.org/


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 ½ tsp turmeric 1 tsp cumin (zeera/jeera) powder 1 tsp coriander (dhaniya) powder 1 tsp red chilli powder ½ 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 she’s slowed down a great deal as she’s 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 she’d 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 e-editions of the Newsletter and Asian MS news. Please contact [email protected] if you are interested in either post and would like further information. Emails should be addressed to Vinnie Kochhar.



General Information Information Hearing factsheet. Second edition October 2012 Although not a common symptom, hearing problems can sometimes be caused by MS. They might, for example, come on during a relapse and improve once the relapse is over. But some people do experience longer lasting changes to their hearing. This is available for download only. Financial assistance There are two grant funds specifically for carers • Young Carers Fund • Carers Opportunities Fund. There is also support for carers through the Short Breaks and Activities Fund. Carers can apply to this for funding towards short breaks and holidays. Find out more from the Grants Team on 020 8438 0700 or [email protected] or visit the grants pages on the website. If you live in Scotland, please call 0131 335 4050 or email [email protected] Emotional support The MS Helpline is available to give free and confidential advice and support to anyone affected by MS from 9am-9pm, Monday- Friday. The helpline number is freephone 0808 800 8000. Please specify if you would like to speak with someone from Asian MS and you will be directed to one of our support officers.

New editions/modifications for MS Society

publications

Benefits and MS (MS Essentials 09) - Eighth edition, October 2012

Claiming DLA (MS Essentials 13) - Ninth edition, October 2012

For a list of all the MS Society’s key publications showing the latest editions and revisions visit the website: www.mssociety.org.uk/ms-resources/key-publications or call 0300 1000 801. To contact the MS Society Information Team: Email [email protected] or call 020 8438 0799 (weekdays 9am-4pm) ***********************************

If you would like a copy of the MS

Society’s latest MS booklet, which has

been translated into 12 languages

including Bengali, Farsi, Gujarati,

Hindi, Punjabi & Urdu, please contact

Saher Usmani on 0208 438 0856 or

[email protected]

They are also available on USB stick for a small fee.

***********************************

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!



http://www.mssociety.org.uk/ms-resources/key-publications

http://www.mssociety.org.uk/ms-resources/key-publications




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


Does salt intake play a role in MS?

http://www.mssociety.org.uk/ms-research/research-

blog/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-wright-

become-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-multiple-

sclerosis-patient-study-shows-high-impact-on-work--

relationships-195527931.html

Brave multiple sclerosis sufferer Stuart scales the heights

http://www.thisisnottingham.co.uk/Brave-multiple-

sclerosis-sufferer-Stuart-scales/story-18323672-

detail/story.html#axzz2NRoqXpXV

Biogen's MS pill wins US approval

http://www.pharmatimes.com/Article/13-03-

27/Biogen_s_MS_pill_wins_US_approval.aspx

Natalizumab shows promise for

teens with multiple sclerosis

http://medicalxpress.com/news/2013

-02-natalizumab-teens-multiple-

sclerosis.html

Former U of A golfer with multiple

sclerosis defies the odds

http://www.azfamily.com/news/Form

er-U-of-A-golfer-with-multiple-

sclerosis-defies-the-odds-

192622591.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/uk-

england-nottinghamshire-21905522

Genzyme multiple sclerosis drug

receives positive CHMP opinion in

Europe

http://regulatoryaffairs.pharmaceutic

al-business-

review.com/news/genzyme-multiple-

sclerosis-drug-receives-positive-

chmp-opinion-in-europe-250313



http://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-ms

http://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-ms

http://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htm

http://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htm

http://www.sciencedaily.com/releases/2013/03/130311101645.htm


http://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.html



http://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXV



http://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspx

http://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspx

http://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.html



http://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.html






http://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522

http://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522

http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-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 MS-related 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

http://www.justgiving.com/AsianMS

http://www.easyfundraising.org.uk/causes/asianms


Useful Information

General and Membership Enquiries: [email protected]

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 [email protected]

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 MS’ers):

http://www.shift.ms/index.php

MS Research Blog (run by Barts & The London Neuroimmunology Group):

http://multiple-sclerosis-research.blogspot.com


http://www.mssociety.org.uk/ms-support/support-groups/asian-ms

http://www.facebook.com/AsiansWithMS

http://twitter.com/AsianswithMS


http://www.mssociety.org.uk/

http://www.justgiving.com/AsianMS

http://www.ukmsregister.org/

http://www.mstrust.org.uk/

http://www.msntc.org.uk/

http://www.shift.ms/index.php

http://multiple-sclerosis-research.blogspot.com/

Asian ms 2013 issue 1

Health & Medicine

Transcript of Asian ms 2013 issue 1