asian ms newsletter issue 1, 2013

7/30/2019 Asian MS Newsletter Issue 1, 2013

1/24

Page 1 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales(07451571)TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 10 to 70070

Issue 1 - 2013

Asian MS

Newsletter

VITAMIN D - The Sunshine VitaminVitamin D is a vitamin thatis being increasinglyrecognized as essential forhealth. We can make

vitamin D through exposingour skin to sunlight orthrough taking supplements

it is rare in foods.

However, vitamin Ddeficiency is now known to

be an epidemic worldwide, mainly as a resultof our changing lifestyles - reduced sunexposure and increasing time spent indoors

prevents us from making vitamin D, thusmaking us vitamin D deficient.

Vitamin D and MS

The notion that vitamin D was involved in thecause of MS was originally proposed toexplain the geography of MS. MS riskincreases with increasing latitude (the further

you are from the equator) and decreasingsunshine exposure. The hypothesis gainedcredibility after it was shown that vitamin D hasa potent effect on the immune system.

Studies that measure vitamin D levels in theblood have shown that individuals whodevelop MS have lower vitamin D levelsbefore disease onset. These studies provide

perhaps the strongest evidence to date

supporting a causal role for vitamin Ddeficiency on MS risk. The datasuggests that a large proportion of MScases could be prevented by

increasing vitamin D levels in thegeneral population.

Evidence for a treatment effect ofvitamin D in modifying the course ofMS is not as strong as evidence for apreventive effect. We await the datafrom large randomized controlled trials(the gold standard to assess if a

treatment works) to assess the effect ofvitamin D on relapse rate and disability.However, MS patients will benefit fromvitamin D supplementation forprevention of osteoporosis andfractures, where vitamin D undoubtedlyhas a protective effect. This is evenmore important as it is now known thatMS patients have a much higher riskfor fractures than people without MS.

Amount of Vitamin

D Needed?

Vitamin D is measured in InternationalUnits (IU). Sun exposure in the middaysummer sun can generate 10,000 IUwithin 15 minutes. However, because

of the lack of sun in the UK,

Dr. Sreeram Ramagopalan


2/24


supplementation may be the only way ofobtaining adequate vitamin D. It is thoughtthat based on current levels in the generalpopulation, adults need to be takingapproximately 5,000 IU of vitamin D perday to ensure vitamin D sufficiency. Youshould get your levels tested to see where

you stand (ask your neurologist or MSnurse). Experts suggest that people withMS use more vitamin D than peoplewithout MS and thus MS patients mayneed to take more than 5,000 IU of vitaminD per day- perhaps 10,000 IU. As witheverything, there is the risk of toxicity oftaking too much vitamin D, but there is nodata at all to suggest that 10,000 IU of

vitamin D per day is toxic. Supplementalvitamin D comes in two forms - D3 (the oneto go for as this is the same vitamin Dproduced by the sun) or D2 (not normallypresent in the body and may have actionsdifferent to D3). ~Dr. SreeramRamagopalan

Do YOU have a

personal story to

tell?

If you would like othersto hear about your

personal journeywith MS then

please do get intouch with us here at Asian MS. [email protected]

FUNDRAISING FOR ASIAN MS

If you are interested in

fundraising for Asian MS, please

contact our fundraising officer, Mukesh

Jethwa [email protected]

We rely on donations to keep going so ifyou know of someone wanting to raisemoney for charity, why not suggest thatthey fundraise for Asian MS? There arefurther details in this newsletter abouthow to make a donation and what themoney 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 theLondon, working for Prof. Gavin Giovannoni. Heis also a Programme Leader at the University ofOxford. He completed his undergraduatedegree and doctorate at the University ofOxford, under the supervision of Prof. GeorgeEbers.

For his PhD, Dr. Ram studied the genetics andthe epidemiology of MS. He is currentlyinterested in how gene-environment

interactions influence the risk of developingMS. He has also just completed an MSc inEpidemiology at the London School of Hygieneand Tropical Medicine (University of London).

He is a regular speaker at conferencesworldwide, research days and MS Society/AsianMS events. He received an MS Society ShiningStar Award in 2012, for which he was nominatedby Asian MS.
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]


3/24


A message from the EditorSpring 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 youwill 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 whichwere 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, its important for MSers 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?!) atsnowboarding. 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

couldnt muster up the strength myself. Id say

getting down the slope on that final day was 5%skill and 95% sheer determination and

stubbornness! Its something I would definitely

try again as a sun lover, its 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 beinterested

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


4/24


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 ofCaring, 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 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

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. Im 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-mshttp://www.mssociety.org.uk/near-me/localservices/women-against-mshttp://www.mssociety.org.uk/near-me/localservices/women-against-mshttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttp://www.mssociety.org.uk/ms-resources/shrinking-monsterhttp://www.mssociety.org.uk/ms-resources/shrinking-monsterhttp://www.mssociety.org.uk/ms-resources/shrinking-monsterhttp://www.mssociety.org.uk/ms-resources/shrinking-monsterhttp://www.mssociety.org.uk/ms-resources/shrinking-monsterhttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttps://www.facebook.com/pages/Women-Against-MS-London-UK/147356341995217?ref=ts&fref=tshttp://www.mssociety.org.uk/near-me/localservices/women-against-mshttp://www.mssociety.org.uk/near-me/localservices/women-against-ms


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NEWS AND HAPPENINGSIla is sho rt l is ted as Volunteer of the

Year

Every year the Royal Borough ofWindsor 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 f ive for MS

Insp irat ion 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!

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 MSCommittee 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 memberKanti was diagnosed with Primary Progressive MSin April 2010. He is a member of the Surrey branchof the MS Society, as well as being an avidsupporter of Asian MS. He is heavily involved infund raising and is also keen to raise awareness ofMS within the Asian community.


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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 greatlyexpanded 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 inparallel. 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 MSers, 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, toname 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__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9http://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9http://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9http://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9http://www.youtube.com/playlist?list=PLC5BBC29967E2E7E9http://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/playlist?list=PLA05CD7CD6704250Dhttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeg


7/24


Knowledge is Power

by Ila Gangotra

Knowledge (noun)- familiarity, awareness, orunderstanding gained through experience or study(reference:http://www.thefreedictionary.com/knowledge).

Since my MS journey began, knowledge has been a focalpoint of every decision that has been considered or made.With two daughters that have the condition, it has alwaysbeen of utmost importance to me that they are able to makeinformed choices regarding treatment and symptommanagement. Thats why I take advantage of everyopportunity I can to expand my knowledge base wheneverpossible.

I have recently had the opportunity to attend and participatein two excellent research events.

I was honored to be invited by Professor Gavin Giovannoniand Alison Thomson to be a lay member on the QuestionTime panel during the 4th Annual Research Day run by Bartsand the London Group. Questions had been submitted byreaders ofTeam 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 ofLondon), who was organizing the event, quickly put me atease and introduced me to the Jargon Bell. The bell wasgiven to me to press whenever I didnt understandsomething that was being said by the professionals on the

panel, as the likelihood was that if I didnt understand it thennor would some of the viewers! As it happens, I didnt needto use it as much as I thought I would, as all the expertswere able to explain things clearly and in an easy tounderstand way.

The panel was chaired by Dr. Gareth Pryce and other panelmembers were Prof. Gavin Giovannoni, Dr. JeremyChataway, Dr. Ruth Dobson and Prof. David Baker.

Some of the topics covered were citizenpetitions to the FDA, the question ofapprovals to use already available drugs in

peoplewith MS,stem celltherapies,liberationtherapy,vitamin D

as a causeor an

effect of MS, healthy lifestyles influencingdisease course, and whether we will see acure for MS in the next 10-15 years.

I would highly recommend people to watchthe videos that are now available viaYouTube at:

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

55E__NlUmDeWs66Jeg

It is a great opportunity to really delve intothe world of MS research and hear some ofthe countrys top experts speak about theissues that are foremost in the minds ofMSers. By the end of the session I definitelyfelt more knowledgeable and it was a realprivilege to have been able to participate in

the initiative!

A few weeks later, I also attended the OxfordResearch Day, which was held by theOxford University Hospitals NHS Trust. Thiswas a good chance to get a more roundedpicture of what is going on in the world of MS

The Question Time Panel
http://www.thefreedictionary.com/knowledgehttp://www.thefreedictionary.com/knowledgehttp://www.thefreedictionary.com/knowledgehttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeghttp://www.thefreedictionary.com/knowledge


8/24


(continued from p.7) research, as it wouldadd to what Id 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. 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 committeemember 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 Barts 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 medicationand 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 attractvolunteers 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 thetrials being conducted by this group,

please contact the MS Trials Office on01865-231869 or at

[email protected]
mailto:[email protected]:[email protected]:[email protected]


9/24


A CHANCE TO GET INVOLVED

Mindfulness based CBT for PPMSers

and SPMSers

This pilot study, being runat Kings College London,aims to see whether amindfulness programmecould be beneficial for people with progressiveforms of MS. Mindfulness is a technique thathelps with distressing emotions, by payingattention to the present, utilising meditationmethods.

Participants will be randomly allocated to awaiting list group or mindfulness group. Themindfulness group will have to attend 8 one-hour sessions (on per week) that will bedelivered online via group-based videoconferencing. Mindfulness participants will begiven the option of having two MRI scans onebefore and one after the course that willexplore whether the course results in any brain

changes. Participants would be asked topractice mindfulness meditation on a regularbasis, using CDs that will be provided. Theywill also be required to fill in 10 questionnaireson three occasions each time they will takearound an hour to complete.

You can participate if you have PrimaryProgressive or Secondary Progressive MS,

have NOT received any formal mindfulnessmethods training, are NOT receiving any otherpsychological treatments (currently), you do nothave severe concentration problems, and youare NOT highly distressed. Participation runsbetween November 2012 and June 2013.

For more information contact Angeliki Bogosian

[email protected] 020-71880190.

THE MS REGISTER Have you signed up

yet?

The MS Register is a

ground-breaking study

designed to increase our

understanding of living withMS 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 aconsultant 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 arecurrently recruiting

participants. If you are

interested please go to:

http://www.mssociety.org.u

k/ms-research/get-involved-

in-research
mailto:[email protected]:[email protected]:[email protected]://www.ukmsregister.org/http://www.ukmsregister.org/http://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.mssociety.org.uk/ms-research/get-involved-in-researchhttp://www.ukmsregister.org/mailto:[email protected]


10/24



Experiences & perceptions of healthcare

services from people with MS and their

clinicians

This study, being run by the University ofManchester, aims to collate the experiences ofMSers of health care services and looking intowhat they believe has been helpful or needsimproving.

The findings will be presented to health careservices, in an attempt to make the experiencesfor people with MS better and potentially improve

patient care.

Participants will be required to chat to aresearcher about their experiences of health careservices for MS, as well as their health careneeds in terms of psychological/emotional andphysical symptoms. This will last for around anhour and can occur at your house, work or at theUniversity of Manchester. Please note that

organisers of the study are unable to reimbursetravel expenses. A small group of participants willbe invited to attend a follow-up interview six andtwelve months after the original interview.Participants can attend the original interviewwithout having to participate in the additionalinterviews.

Participants must be over 18 years old and have

a confirmed diagnosis of MS. They should also beliving in the Greater Manchester region. It isrunning between September 2012 andSeptember 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. 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

people. Contact Samantha [email protected] on

020 8438 0700 and/or Asian MS at

[email protected]

For more information on Healthwatch visit

www.healthwatch.co.uk
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.healthwatch.co.uk/http://www.healthwatch.co.uk/http://www.healthwatch.co.uk/mailto:[email protected]:[email protected]:[email protected]


11/24



Personal Experiences of People with MS An

Explorative Study

This study, being run by theUniversity of Oxford, aims to

look at the experiences ofpeople with MS,

identifying changingneeds and howclinicians canprovide support at

different stages of MS. Study findings willhopefully help to improve health services forpeople with MS and will be shared amongstresearchers, clinicians, people affected by MS,policy-makers and academics.

Participants would be asked for a face-to-faceinterview about their experiences of MS,including what their thoughts and feelings havebeen at different stages, how you have madedecisions and how you have obtainedinformation. The interviews will probably last foraround 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 forparticipants is happening now and the interviewcan be arranged for a time and date that isconvenient to you. The exact date for recruitmentis unknown, however, it is predicted to be aroundJune 2013. The interview will be arranged to takeplace in a venue convenient to you.

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

Tell me about your pain... Pain in MS

(PiMS study)

This study, being run by the Institute ofPsychiatry at Kings College London, aims toexplore pain in MS from the patients point ofview. In particular, how you view pain, howyou deal with it on a daily basis, how it affectsyou and what your views are on improvingpain management and current care provided.Findings from the study will hopefully helpresearchers to develop new treatments aimedat improving how people with MS deal withtheir pain.

The study seeks to find out about your

experiences of health careservices that have tried to helpyou with your pain; whether itwas helpful or not and what

needs to be improved, in your opinion, in thefuture. The findings will be shared with healthcare services and researchers to improve thecare service experience for people with MS. It

will also aid researchers in developing morefocused questions for a bigger postal surveystudy that starts in June 2013.

Participants will be interviewed by aresearcher, either over the telephone, at work,at home or at a Kings College Londonbuilding. Unfortunately, travel expensescannot be reimbursed. Interviews will last for

around 30-60 minutes.Participants need to have a confirmed MSdiagnosis, be over 18 and experience someform of MS-related pain. It runs from March2013 to July 2013.

For more information, please contact Anthony

Harrison [email protected]

call/text 07936-448926 leaving your name anda contact number.
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]


12/24



A Flourishing Life: Single Women Living

Well with MS

This study, being run bythe University of EastLondon, aims to look at theexperiences of singlewomen living with MS. A lotof previous researchconcentrates on MS as an

illness and has neglected people who are livingsuccessful, productive and happy lives whilstliving with the challenges of MS. Hopefully, the

study results will form the basis for moreresearch on psychosocial wellbeing of peoplewith MS and lead to the development ofinterventions to support people with MS.

Participants will be interviewed face-to-face andthe information they provide will be analysed.

All data will be made anonymous and will besecurely stored. Interviews will last for around

40-60mins and will take place inNorth Kent and London.

You can take part if you are asingle female who is over 18and who has had aconfirmed MS diagnosis for at least two years.The study is running between February 2013and September 2013.

For more information contact Jane Stuchbury

by email [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 aspossible.

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 repairwith 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 ofthe 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
mailto:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/jlahttp://www.mssociety.org.uk/jlahttp://www.mssociety.org.uk/jlamailto:[email protected]


13/24


MS Activity Weekend

Friday 24th - Monday 27th May 2013For people with MS, their families andfriends

Choose from a variety of activities orrelax in the tranquil setting of thebeautiful Kielder Water & Forest Park.

3 Nights 317Includes accommodation, activities andall meals

Or book the Respite Care Package(over 18s)3 Nights 488Includes care, accommodation, activitiesand all meals

To book call 01434 250232 oremailenquiries@calvert-

kielder.com

To find out more about theCalvert Trusts Exmoor, Kielder

and Lake District sites, please goto:

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 duringtheir 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 ofWales, 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 awealth of information and support available online to help you plan your trip. A good

source of information is:

http: / /www.disabledhol idayinfo.org.uk/ index.htm

Even if you dont have accessibility needs, travelling when you have MS does oftenneed 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 offorward planning will help to make your holiday hassle-free!
mailto:[email protected]:[email protected]:[email protected]:[email protected]://www.calvert-trust.org.uk/http://www.calvert-trust.org.uk/mailto:[email protected]:[email protected]://www.disabledholidayinfo.org.uk/index.htmhttp://www.disabledholidayinfo.org.uk/index.htmhttp://www.disabledholidayinfo.org.uk/index.htmmailto:[email protected]://www.calvert-trust.org.uk/mailto:[email protected]:[email protected]


14/24


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 83937750.

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 costis 200 per week and includes a SHARE fitness leisure pass.Bookings are taken on a first come, first served basis. To booka holiday please contact Mark on 028 9080 2802 [email protected].

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

an endorsement by Asian MS or its committee members


15/24


SUPPORT SCHEME

Mentioned in the last newsletter, the MS Society is running a scheme which AsianMS is supporting. This is a great opportunity for our members to become involved inthis innovative pilot scheme.

It is a pilot scheme that assists people with MS to plan ahead and to identify thetypes of support that is available to them, if they need more help to carry out day today activities. You cant predict how your MS will affect you over time, however, youcan plan what support you may need for day-to-day activities.

Most people who have any sort of long term condition have a support networkaround them friends or relatives who will help them with day-to-day activities all thetime 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 willcope when things are worse and provide a slightly more formalised record of whohas agreed to help.

The scheme will run during 2013 and will help people to plan and identify what helpis available to them.

A trained volunteer from Asian MS will help individuals to write their own supportplan. 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 ofcontact for help.

A small grant of 100 will be made available for the person with MS to spend onproviding support. They can use the money for almost anything they need, forexample contributing towards the cost of petrol if a colleague gives them a lift towork.

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 ofMS) and would like to get involved, please email Saher at the MS Society at

[email protected] call her on 020 8438 0856.
mailto:[email protected]:[email protected]:[email protected]


16/24


Example of a Support Plan.

Name:Felicity Farmer(This is a lady that has small children, and workspart-time. She has friends and family close by to support her)

What help do you thinkyou will need?

How oftendo youthinkyoullneed thissupportper day /week?

Who is your1st choicewho canprovide thissupport foryou?

Who is thealternativeperson whocan providethis support ifyour 1stchoice isntavailable?

How much money to saythank you / pay forsupport?

Someone to drive the

children to schooland home again

Twice a

day

My friend

Donna, asherchildren goto thesameschool

My friend

Tracey

10 towards petrol

Shopping for food Twice aweek

My friendPam asshe can do

myshopping atthe sametime ashers

My friendTracey

5 bunch of flowers tosay thank you

Travelling to andfrom work if I cannotdrive

Twice perday

MycolleaguePhilip livesnear by

and I canshare a liftwith him

My dad 10 towards petrol

To save you looking for contact numbers when you need them, why not list them hereso they can all be easily found.

Mum & Dad: 01273 555555 Donna: 01273 666666 Tracey: 01273 777777 Pam:01273 888888 Peter: 01273 333333 Philip: 01273 444444 Jo: 01273 222222


17/24


GENERAL NEWSMS SOCIETY AWARD

NOMINATIONS NOWOPEN

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 protected] go

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

society-awards-2013

Asian MS member Amrit Gajjar was a previous winner ofthe Carer of the Year Award. You can see him here

collecting his award in 2011.

MS Matters gets

a new look!If youre a member of the MSSociety 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.
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013http://www.mssociety.org.uk/ms-events/2013/01/ms-society-awards-2013mailto:[email protected]:[email protected]


18/24


GENERAL NEWSMS 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/Read/4885/1

MS In the Media

Asian MS Committeemembers Sanjay Chadha

and myself (pictured below)were featured in adocumentary produced by

Priyal Raja.

Shiv Sanjay

The film was made by a person with MS,starred people with MS and aimed to provideinformation for people with and without MSabout how having a positive attitude can bebeneficial. All those involved were determinedto 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 theUniversity of West London in Ealing. I met him

a few years ago with his parents and sister atan Asian MS event in Slough, which launchedthe Societys MapMS campaign(http://www.mapms.org.uk).

Priyal is an editor of the online magazineDesiblitz.com, where he does articles onwhats going on in Bollywood and alsointerviews Bollywood celebrities. He iscurrently assisting Prakash Jha in his latestBollywood movie Satyagraha, which isreleasing in August 2013 and stars Bollywoodgreats such as Kareena Kapoor, AmitabhBhachan, 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 clickingthe following link:

http://www.youtube.com/watch?v=f6zv8uzb

H7o&feature=youtu.be

Would you be interested in becoming a regional contactfor Asian MS? Wed love to hear from you as we want tobuild a network of support for Asian MSers around the

country. Please contact us [email protected] further information.
http://www.ukmsregister.org/Newsletter/Read/4885/1http://www.ukmsregister.org/Newsletter/Read/4885/1http://www.ukmsregister.org/Newsletter/Read/4885/1http://www.mapms.org.uk/http://www.mapms.org.uk/http://www.mapms.org.uk/http://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.behttp://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.behttp://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.bemailto:[email protected]:[email protected]:[email protected]://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.behttp://www.youtube.com/watch?v=f6zv8uzbH7o&feature=youtu.behttp://www.mapms.org.uk/http://www.ukmsregister.org/Newsletter/Read/4885/1http://www.ukmsregister.org/Newsletter/Read/4885/1


19/24


DATES FOR

YOUR

DIARY

Asian MS Annual MeetingThe Asian MS Annual Meeting has comearound again and will be held at MS NationalCentre in Cricklewood, London, in May 2013.The Annual Meeting is a chance to elect yourcommittee for the year, hear some fantasticspeakers and have an opportunity to meetother Asian MS members and peopleinvolved in the MS Society. There is always

lots of food, drink and chat. Whether youre anew member or a long-standing one, wedlove to see you down there. More details,including the exact date and time, will besent out to members in an email bulletin sokeep your eyes peeled! Members and non-members are welcome.

MS Societys 60th Anniversary!

In 2013, the MS Society turns 60years old. It was founded by Maryand Richard Cave to support andempower people affected by MS.The MS Society will be celebrating

the achievements of everyone involved in theorganisation and will be looking forward to anexciting future.Rather than take resources away from vital

research and support, celebrations will beintegrated into existing events. MS Week,annual meetings, national fundraising eventsand the MS Awards will all have extra 60thsparkle.If you have any ideas about how to make

fundraising events that extra bit special then

please email them to:[email protected]

MS Week 2013This year, MS Week will take place between 29th Apriland 5th May. This year, the MS Society will be raisingawareness about the challenges MSers face inaccessing the right support and healthcare at a local andnational level.There will be lots of ways to get involved and to raise

funds to help support the MS Society. You can also usethe opportunity to help raise awareness of MS within theAsian community and fund raise for Asian MS! If youneed help to set up any events, then please contactMukesh Jethwa, the Fundraising Officer for Asian MS, [email protected] will also be information about MS Week appearingon the MS Societys website:http://www.mssociety.org.uk/ms-events/2012/11/ms-

week-2013

Cake Break 2013This year, the MS Society is hoping toraise around 350,000 through itspopular cake breaks, in order tosupport the societys work bothnationally and locally.

Its not too late to request a pack and get involved.Please [email protected] phone0845-4811577. Supporters interested in hosting a CakeBreak can register to receive a free fundraising pack atwww.mssociety.org.uk/cakebreak

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 yourlocal carers centre to find out what else is happening nearyou? Visitwww.carers.org/carersservices/find-your-local-serviceto find them, orwww.carersweek.orgtoread more about the national campaign.
mailto:[email protected]:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013http://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013http://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013mailto:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/cakebreakhttp://www.mssociety.org.uk/cakebreakhttp://www.carers.org/carersservices/find-your-local-servicehttp://www.carers.org/carersservices/find-your-local-servicehttp://www.carers.org/carersservices/find-your-local-servicehttp://www.carers.org/carersservices/find-your-local-servicehttp://www.carersweek.org/http://www.carersweek.org/http://www.carersweek.org/http://www.carersweek.org/http://www.carers.org/carersservices/find-your-local-servicehttp://www.carers.org/carersservices/find-your-local-servicehttp://www.mssociety.org.uk/cakebreakmailto:[email protected]://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013http://www.mssociety.org.uk/ms-events/2012/11/ms-week-2013mailto:[email protected]:[email protected]


20/24


Recipe from Lubna

King Prawn Curry

Ingredients:8oz /250g shelled raw king prawns2 medium onions, finely chopped3 tbsp sunflower oil3 medium tomatoes, finely chopped1 tsp garlic paste1 tsp ginger paste tsp turmeric1 tsp cumin (zeera/jeera) powder

1 tsp coriander (dhaniya) powder1 tsp red chilli powder tsp salt or to taste3 tbsp fresh coriander, chopped

Method:-De-vein the prawns and sprinkle with turmericand mix well so that all the prawns are coated,then set aside.

-Heat the oil in a pan andadd the chopped onionsand fry until golden

brown.

-Add the spices and stir for a few seconds, putin the tomatoes and fry for a few minutes untilthe 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 for3-4 minutes; you should be left with a thicksauce.

-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 ofmore volunteers to help us to continue offering our

support and services. Communication with ourmembership is of utmost importance to us and weare still looking to appoint a MembershipSecretary and a Website Editor.

The Membership Secretary would be mainlyresponsible for dealing with correspondence andmembership issues (such as maintaining themembership database).

The Website Editor would be in charge of updatingthe Asian MS website, particularly uploading e-editions of the Newsletter and Asian MS news.Please [email protected] are interested in either post and would likefurther information. Emails should be addressed toVinnie Kochhar.
mailto:[email protected]:[email protected]:[email protected]:[email protected]


21/24


General InformationInformation

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 [email protected] visit

the grants pages on the website.

If you live in Scotland, please call 0131 335 4050

or [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 Societys key

publications showing the latest editions

and revisions visit the website:

www.mssociety.org.uk/ms-

resources/key-publicationsor call 0300

1000 801.

To contact the MS Society Information

Team: [email protected]

or call 020 8438 0799 (weekdays 9am-

4pm)

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

If you would like a copy of the MSSocietys 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 youwould like to submit a nomination for the MS

Society Awards 2013, as we will be able to offerhelp and support when filling out the

nomination forms!
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/ms-resources/key-publicationshttp://www.mssociety.org.uk/ms-resources/key-publicationshttp://www.mssociety.org.uk/ms-resources/key-publicationsmailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/ms-resources/key-publicationshttp://www.mssociety.org.uk/ms-resources/key-publicationsmailto:[email protected]:[email protected]


22/24


LATEST RESEARCH & MS IN THE NEWSSimple 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/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.bbc.co.uk/news/health-20836082http://www.bbc.co.uk/news/health-20836082http://www.bbc.co.uk/news/health-21372793http://www.bbc.co.uk/news/health-21372793http://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-mshttp://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-mshttp://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-mshttp://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htmhttp://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htmhttp://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htmhttp://www.sciencedaily.com/releases/2013/03/130311101645.htmhttp://www.sciencedaily.com/releases/2013/03/130311101645.htmhttp://www.sciencedaily.com/releases/2013/03/130311101645.htmhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspxhttp://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspxhttp://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspxhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.sciencedaily.com/releases/2013/02/130221084610.htmhttp://www.sciencedaily.com/releases/2013/02/130221084610.htmhttp://www.sciencedaily.com/releases/2013/02/130221084610.htmhttp://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522http://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522http://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://regulatoryaffairs.pharmaceutical-business-review.com/news/genzyme-multiple-sclerosis-drug-receives-positive-chmp-opinion-in-europe-250313http://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522http://www.bbc.co.uk/news/uk-england-nottinghamshire-21905522http://www.sciencedaily.com/releases/2013/02/130221084610.htmhttp://www.sciencedaily.com/releases/2013/02/130221084610.htmhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://www.azfamily.com/news/Former-U-of-A-golfer-with-multiple-sclerosis-defies-the-odds-192622591.htmlhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://medicalxpress.com/news/2013-02-natalizumab-teens-multiple-sclerosis.htmlhttp://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspxhttp://www.pharmatimes.com/Article/13-03-27/Biogen_s_MS_pill_wins_US_approval.aspxhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.thisisnottingham.co.uk/Brave-multiple-sclerosis-sufferer-Stuart-scales/story-18323672-detail/story.html#axzz2NRoqXpXVhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.prnewswire.com/news-releases/large-multiple-sclerosis-patient-study-shows-high-impact-on-work--relationships-195527931.htmlhttp://www.sciencedaily.com/releases/2013/03/130311101645.htmhttp://www.sciencedaily.com/releases/2013/03/130311101645.htmhttp://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htmhttp://www.happynews.com/news/3122013/chris-wright-become-first-nba-player-multiple-sclerosis.htmhttp://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-mshttp://www.mssociety.org.uk/ms-research/research-blog/2013/03/does-salt-intake-play-role-mshttp://www.bbc.co.uk/news/health-21372793http://www.bbc.co.uk/news/health-20836082


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FUNDRAISING FOR ASIAN MSWhere do the funds go?

Asian MS is funded purely bydonations, which areused for variouspurposes. They includegrants for individuals tohelp them attend MS-related events, contributions to research

projects, and administration costs.

The Myelin Repair Project

One research initiative that has recentlyreceived 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 programmesaw the identification of a drug that could

potentially repair myelin, which is damaged in

people with MS. The project is now movinginto a second stage where researchers will

undertake pre-clinical research, with the aimof ultimately translating lab findings into a

clinical trial.

Asian MSare proud to announce that they now have the facilities to allow people to make donationsin 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 70070Remember 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, whichwill 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/AsianMShttp://www.justgiving.com/AsianMShttp://www.easyfundraising.org.uk/causes/asianmshttp://www.easyfundraising.org.uk/causes/asianmshttp://www.easyfundraising.org.uk/causes/asianmshttp://www.justgiving.com/AsianMS


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Page 24 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales(07451571)

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 [email protected]

Asian MS is a national support group for Asians withMS, 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 Helpl ine:0808 800 8000

Asian MS JustGiving:www.justgiving.com/AsianMS

MS Regis ter:www.ukmsregister.org

MS Trust (chari ty that prov ides inform at ion 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
mailto:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/ms-support/support-groups/asian-mshttp://www.mssociety.org.uk/ms-support/support-groups/asian-mshttp://www.mssociety.org.uk/ms-support/support-groups/asian-mshttp://www.facebook.com/AsiansWithMShttp://www.facebook.com/AsiansWithMShttp://www.facebook.com/AsiansWithMShttp://twitter.com/AsianswithMShttp://twitter.com/AsianswithMShttp://twitter.com/AsianswithMSmailto:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/http://www.mssociety.org.uk/http://www.mssociety.org.uk/http://www.justgiving.com/AsianMShttp://www.justgiving.com/AsianMShttp://www.justgiving.com/AsianMShttp://www.ukmsregister.org/http://www.ukmsregister.org/http://www.ukmsregister.org/http://www.mstrust.org.uk/http://www.mstrust.org.uk/http://www.msntc.org.uk/http://www.msntc.org.uk/http://www.msntc.org.uk/http://www.shift.ms/index.phphttp://www.shift.ms/index.phphttp://multiple-sclerosis-research.blogspot.com/http://multiple-sclerosis-research.blogspot.com/http://multiple-sclerosis-research.blogspot.com/http://www.shift.ms/index.phphttp://www.msntc.org.uk/http://www.mstrust.org.uk/http://www.ukmsregister.org/http://www.justgiving.com/AsianMShttp://www.mssociety.org.uk/mailto:[email protected]://twitter.com/AsianswithMShttp://www.facebook.com/AsiansWithMShttp://www.mssociety.org.uk/ms-support/support-groups/asian-msmailto:[email protected]

asian ms newsletter issue 1, 2013

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