Asian MS Newsletter Winter Issue, 2011

7/30/2019 Asian MS Newsletter Winter Issue, 2011

1/11

1

Winter Issu e 2011

Asian MS

Newsletter

GET READY FOR MS LIFE!MS Life is back and will be held over the weekend of

14-15 April 2012 in

Manchester. Around4,000 people with someconnection to MS areexpected to attend, which

would be a rise from the 3,500 visitors to MS Life2009 in Newcastle Gateshead.

The main objectives of MS Life are to:

Provide live, up to date evidence-basedinformation for people affected by MS

Raise the profile of MS and the MS Societyamong the general public

Build relationships with people affectedby MS

Raise vital funds for the MS Society

MS Life 2012 will have Get Active as its theme, inkeeping with it being the same year as the London2012 Olympics. Getting active will not just be aboutbecoming physically active but also getting active involunteering, campaigning and fundraising with theMS Society.

While the main audience for the event will be youngpeople affected by MS, in the 20-40 year age range

(the most common age for diagnosis), everyonelinked with MS is very welcome to attend.

The weekend will include research talks fromworld-leading scientists, question time debatesessions, around 100 exhibitors, seminars onvarious aspects of living with MS, complementaryhealth sessions (including reiki, pilates and yoga),beauty and pampering sessions, Get Active light

exercise sessions, and various social events suchas club nights and fashion shows. There will alsobe a crche available, as well as an internet cafeand interactive areas.

For more information and to be kept up to date about MS Life, please go to:http://www.mssociety.org.uk/ms-events/ms-life-2012

Asian MS will be present at MS Life. As well as

running workshops, we will have a stall along

with the MS Societys other support groups.

There will be a live cookery theatre with the

theme Food Around the World. We hope to

attract top celebrity chefs to dodemonstrations and help get MSers and their

families into the kitchen and preparing healthy,

exciting and tasty dishes.
http://www.mssociety.org.uk/ms-events/ms-life-2012http://www.mssociety.org.uk/ms-events/ms-life-2012http://www.mssociety.org.uk/ms-events/ms-life-2012


2/11

2

WHAT IS THE MS REGISTER?

In response to some requests after the lastnewsletter, here is some more information

about the MS Register:

The MS Register is the first study to link

information provided by MSers about how the

condition affects their daily lives with clinical

information from various pilot sites in the UK.

This information could be used to help drive

changes in MS management and servicesprovision, offering real evidence to policy makers

to support demand for services.

People who have MS and are over 18 years old

can participate. Initially, clinical information is

being collected from a small number of pilot

sites (Royal Victoria Hospital, Belfast; Western

General Hospital, Edinburgh; St. Marys Hospital,

London; Queens Medical Centre, Nottingham;

and Morriston Hospital, Swansea), while lifestyle

information is being collected online from

MSers across the UK. It is hoped that more MS

clinical centers will be able to get involved if a

full Register gets the go-ahead.

The Register is run by Swansea University and

funded by the MS Society. To get involved,

particularly with the lifestyle portion of the

Register, please visit:

http://www.ukmsregister.org

A Regional Outlook

-by Manisha Chandarana & Trishna Bharadia

While many of Asian MSs events have

tended to be based around the South-East and

London, particularly when MS NationalCentre has been involved, we know that there

are plenty of members outside of the M25

area (there is, after all, a whole country north

of Watford, and MS has no geographical

boundaries!) So far, however, it has been

difficult to easily incorporate these current

and potential members into active

participation.

As someone who lives outside the M25 area,

Asian MS member Manisha Chandarana is

keen to see greater support and activity at a

regional level from Asian MS.

In a bid to try to make the group more

national, Asian MS is considering setting up

regional coordinators who can promote the

support group within their regions and act as

a point of contact for members there. At alater stage, they could also organise events at

a regional level.

Asian MS is a very much a member-driven

organisation, so your views are important to

us. Please get in touch if you have any ideas

or are interested in possibly becoming a

regional coordinator.

FUNDRAISING FOR ASIAN MS

If you are interested in fundraising for Asian MS, please contact our fundraising

officer, Mukesh Jethwa [email protected]

We rely on donations to keep going so if you know of someone wanting to raise

money for charity, why not suggest to them they fundraise for Asian MS?
http://www.ukmsregister.org/http://www.ukmsregister.org/mailto:[email protected]:[email protected]:[email protected]:[email protected]://www.ukmsregister.org/


3/11

3

EVENTS

KEY DATES FOR YOUR DIARY

Asian MSThe Big FundraiserGet ready to enjoy a gala eventaimed at raising funds for AsianMS! This plans to be a funfilled event with greatmusic, food, drinking anddancing. Most importantly, itwill be Asian MSs mainfundraising event so pleasekeep your eyes peeled for more information comingsoon and show your support. If you are interested inhelping with the organization of this event or youhave contacts that may be able to offer theirservices, please do get in touch via the Asian MSemail address.

14th-15th April 2012

MS Life, Manchester

The largest event inEurope for peopleaffected by MS. It willinclude research talks, workshops, lifestyle eventsand an exhibition. Please see Page 1 for moredetails.

28th January 2012- MS Research Day in LondonBarts and the London Neuroimmunology Groupwill be holding their third annual Research Day forpeople with MS and their families on Saturday 28thJanuary 2012. The event will be held at ChurchHouse Conference Centre, Deans Yard,Westminster, London SW1P 3NZ.

It is a chance for people to hear about the MSresearch being conducted by the group and to askthe team questions. Topics discussed at previousresearch days include: Vitamin D, EBV & MS,MS Sibling Study, Emerging MS Therapies andWhat is the evidence remyelination occurs?

For further information please contact MariaEspasandin via email [email protected] by telephone on

020 7377 7000 ext. 3303.

MS WEEK 2012 will be30th April 6th May! How will

you help raise awareness?

If you would like a copy of the MS Societyslatest MS booklet, which has been translatedinto 12 languages including Urdu, Hindi,Punjabi, Bengali, Gujerati and Farsi, pleasecontact Saher Usmani on 0208 438 0856 or

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


4/11

4

A Round-Up from ECTRIMSDr. Ruth Dobson, a researcher from Barts and

the London Neuroimmunology Group,attended the ECTRIMS 2011 conference in

Amsterdam and has produced a round-up of

the main outcomes, exclusively for Asian MS

(see below).

ECTRIMS is a professional organisation focused

on the understanding and treatment of MS. It

is an independent representative organisation

that helps to enable communication among

scientists and clinicians for the promotion and

betterment of research, as well as the

improvement of clinical outcomes in the

condition. The organisation hosts the biggest

annual international conference in the world

that is dedicated to clinical and basic research

in MS.

ECTRIMS highlights by Dr. Ruth Dobson

The snappily titled Joint European Committee

for Treatment and Research in MS and

American Committee for Treatment and

Research in MS (or ECTRIMS and ACTRIMS as

they are better known) had their 5th

joint

congress in Amsterdam in October 2011. Over

4 days, cutting edge research highlights from

the world of MS were presented to over 6,000

international delegates. Whilst it is difficult topick the highlights out of such a crammed

program, in my opinion much of the data

surrounded novel therapies for MS.

Promising results were presented from a trial

of BG-12, or dimethyl fumarate, an oral

therapy. BG-12 was shown to reduce the risk

of relapse by 49 percent in patients who took

the drug twice a day and 50 percent in patientswho took it three times a day. The risk of

disability progression was reduced by 38% with

BG-12 twice daily and by approximately 34% with

BG-12 three times daily. This drug, which has good

long term safety data (it has previously been used

to treat psoriasis in Germany), looks like it may be a

useful addition to our MS treatment repertoire.

Alemtuzumab, or Campath, also presented positive

results: Campath reduced the annual relapse rateby 55% compared to interferon. Importantly, there

were no treatment discontinuations due to side

effects, although slightly worrying is the fact that 2

patients receiving Campath developed thyroid

cancer. Daclizumab, a treatment which needs to be

injected once a month, gave some promising

results with a reduction in both relapse rate and

MRI evidence of MS activity over a 52-week period.

Although this is only a tiny fraction of the data that

was presented, it hopefully sheds some light on

much of the work that is being done to develop

new treatments for MS.

ECTRIMS on Shift.ms

Shift.ms attended ECTRIMS and

produced a series of videos rounding

up various topics dealt with at the conference.

Three are already online and can be viewed at:

Dr. Simon Shields on Current Therapies:

http://shift.ms/magazine/2011/11/simon-

rounds-up-current-therapies/

Prof. Gavin Giovannoni on Injectable

Therapies:

http://shift.ms/magazine/2011/10/research-round-up-on-injectable-therapies/

Dr. Alasdair Coles on Alemtuzumab (Campath):

http://shift.ms/magazine/2011/10/our-first-

research-update-alemtuzumab-campath/
http://shift.ms/magazine/2011/11/simon-rounds-up-current-therapies/http://shift.ms/magazine/2011/11/simon-rounds-up-current-therapies/http://shift.ms/magazine/2011/11/simon-rounds-up-current-therapies/http://shift.ms/magazine/2011/10/research-round-up-on-injectable-therapies/http://shift.ms/magazine/2011/10/research-round-up-on-injectable-therapies/http://shift.ms/magazine/2011/10/research-round-up-on-injectable-therapies/http://shift.ms/magazine/2011/10/our-first-research-update-alemtuzumab-campath/http://shift.ms/magazine/2011/10/our-first-research-update-alemtuzumab-campath/http://shift.ms/magazine/2011/10/our-first-research-update-alemtuzumab-campath/http://shift.ms/magazine/2011/10/our-first-research-update-alemtuzumab-campath/http://shift.ms/magazine/2011/10/our-first-research-update-alemtuzumab-campath/http://shift.ms/magazine/2011/10/research-round-up-on-injectable-therapies/http://shift.ms/magazine/2011/10/research-round-up-on-injectable-therapies/http://shift.ms/magazine/2011/11/simon-rounds-up-current-therapies/http://shift.ms/magazine/2011/11/simon-rounds-up-current-therapies/


5/11

5

RECENT EVENTS

Asian MS Social 2011

The annual Asian MS social on Sunday 20th

November was a great success, once again! There

were lots of new faces at the Bombay Palace

restaurant in London, which is testament to the

work Asian MS has been doing to try to increase

awareness of the group and increase its

membership base.

We were very privileged to be joined by Prof.

David Baker from Barts and the London

Neuroimmunology Group. He gave a very

interesting, enjoyable and informative talk about

emerging therapies. Other MS

professionals that were in

attendance included Dr. Paul

Creeke, also from Barts, and

Dr. Jonathan Koffman from

Kings College London. MS

Society representatives

included Sonal Patel and

Saher Usmani.

The lunch gave people

an opportunity to

mingle and chat to

others affected in some

way by MS. Feedback

was very positive, with

many of the newer faces in particular saying that

it was a great chance for them to be able to share

experiences and advice.

If you have any comments about the social or

suggestions for next time then please email Asian

MS!

Amrit wins MS Societys Carer of the

Year Award 2011

Following the

news in the

last

newsletter that AsianMS member Amrit Gajjar had been nominated as

Carer of the Year for the MS Societys 2011

Awards, we at Asian MS are very proud to report

that Amrit was chosen to receive the award.

Congratulations go to Amrit and his family. You

can see a video of him after receiving his award

at the following link:

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

uIGgZw

Young Carer meets JLSthanks to Asian MS

Nottinghamshire-based Libby Walker and her

Mum, Hayley, were given the fantastic chance

to meet pop group JLS backstage at theirconcert in Edinburgh in July, thanks to a

Facebook competition run by Asian MS, with

the help of committee member Rani Kaur. JLS

band member Oritse Williams (pictured

second

from left)

has a close

connection

with MS, ashis mum

has the

condition. Libby, a young carer, was very

excited to meet the band and enjoyed their

concert immensely, although she couldnt

make up her mind as to which band member

was her favourite!
http://www.youtube.com/watch?v=7cFTOuIGgZwhttp://www.youtube.com/watch?v=7cFTOuIGgZwhttp://www.youtube.com/watch?v=7cFTOuIGgZwhttp://www.youtube.com/watch?v=7cFTOuIGgZwhttp://www.youtube.com/watch?v=7cFTOuIGgZw


6/11

6

EXERCISE & MS The Peoples

Hot Topic at Shift.ms

Exercise is one of the ways in which MSers

can help themselves to stay healthy over

the wintertime (see separate feature),

however, exercising generally can be

beneficial for MSers all year-round.

Shift.ms has been running a series of

articles and features via their online

magazine, aimed at educating and

informing about safe and beneficial

exercise for people at all stages of the

disease.

Dr. Monica Marta gives her Top 10 Tips for Exercise

& MS in this useful video:

http://shift.ms/magazine/2011/11/top-tips-on-

exercise-and-ms/

Trishna gives her take on being an active hockey

player while coping with the effects of MS:

http://shift.ms/magazine/2011/11/jolly-hockey-

sticks-with-a-sprinkling-of-ms/

Dr. Monica Marta answers MSers questions on

exercising with MS in this video:

http://shift.ms/magazine/2011/11/exercise-and-

ms-your-questions-answered/

MS THERAPY CENTRESFor anyone with MS, especially those affected

by mobility issues, starting out on an exercise

programme can be a daunting prospect. Risk of

injury, fatigue and finding a type of exercise

which is suitable to someones particular needs

are all challenges which some may find too

daunting to take on by themselves.

A good starting point is an MS Therapy Centre.

These independently-run organisations (which

do not form part of the MS Society but which

are found all over the country), can offer a wide

range of exercise options and therapies for

MSers with a wide range of abilities. Most have

a trained physiotherapist who can undertake a

consultation to tailor an exercise programme to

an individuals needs, depending on what

equipment is available at their centre.

MSers who are still mobile can have the

opportunity to use it like a personal training

session, to build up muscle and core strength

on gym equipment to help minimise problems in

the future; while MSers who are less mobile

can use it to help keep their muscles flexible

and supple, especially if spasticity is a problem,

using specialist equipment such as standing

frames. All this can be done in a safe

environment with trained specialists on hand

who understand the specific needs of people

with MS. Many centres also offer classes, such

as yoga and pilates, which can also bebeneficial for people with MS.

For more information, go to:

http://www.msntc.org.uk/
http://shift.ms/magazine/2011/11/top-tips-on-exercise-and-ms/http://shift.ms/magazine/2011/11/top-tips-on-exercise-and-ms/http://shift.ms/magazine/2011/11/top-tips-on-exercise-and-ms/http://shift.ms/magazine/2011/11/jolly-hockey-sticks-with-a-sprinkling-of-ms/http://shift.ms/magazine/2011/11/jolly-hockey-sticks-with-a-sprinkling-of-ms/http://shift.ms/magazine/2011/11/jolly-hockey-sticks-with-a-sprinkling-of-ms/http://shift.ms/magazine/2011/11/exercise-and-ms-your-questions-answered/http://shift.ms/magazine/2011/11/exercise-and-ms-your-questions-answered/http://shift.ms/magazine/2011/11/exercise-and-ms-your-questions-answered/http://www.msntc.org.uk/http://www.msntc.org.uk/http://www.msntc.org.uk/http://shift.ms/magazine/2011/11/exercise-and-ms-your-questions-answered/http://shift.ms/magazine/2011/11/exercise-and-ms-your-questions-answered/http://shift.ms/magazine/2011/11/jolly-hockey-sticks-with-a-sprinkling-of-ms/http://shift.ms/magazine/2011/11/jolly-hockey-sticks-with-a-sprinkling-of-ms/http://shift.ms/magazine/2011/11/top-tips-on-exercise-and-ms/http://shift.ms/magazine/2011/11/top-tips-on-exercise-and-ms/


7/11

7

KEEPING HEALTHY THIS WINTERThese tips have come together with the help of the Neuroimmunology team at Barts & The

London Group

GET YOUR FLU JAB: Dr Klaus Schmierer

recommends you get your flu jab. Go to yourlocal GP as soon as possible if you havent had

it already.

GET YOUR VITAMIN D:

Throughout the winter

months you wont get

enough Vitamin D. Studies

are showing that it can have

real benefits for MSers. Dr

Monica Marta recommends going on a nice

sunny holiday. Not all of us can manage that

so Vitamin D supplements are the next best

thing to a warm sandy beach! Also see Dr.

Rams video on Vitamin D:

http://shift.ms/magazine/2011/09/vitamin-

d-your-questions-answered/

EXERCISE: Professor Gavin Giovannoni

emphasises exercising through the winter

months. Keep active, fight the urge to

hibernate on the sofa during those cold, dark

days.

WRAP UP WELL: Dr Ruth Dobson

reminds us that the flu jab whilst

greatdoesnt protect against the common

cold. So wrap up well, especially if the cold

brings out your symptoms. Lots of layers are

great for keeping you toasty. Many shops do

those pretty attractive thermals (!), while

there are also ranges of clothing (sometimes

known as skins or baselayers) that keep

body temperature regulated.

WASH YOUR HANDS:Tis the season of sneezes and

sniffles. Whilst you cant stop that man on the trainfrom coughing away, you can protect yourself and

your family by washing your hands especially after

going on public transport, advises Dr Monica Marta.

MAKE SURE YOUR HEATING WORKS: Most

energy suppliers have provisions for people

who are chronically ill so its worth

contacting them to see what they offer:

http://news.bbc.co.uk/1/hi/business/4371186.stm

CONSIDER YOUR MEDICATION NEEDS: If you take

medication, make sure you have sufficient supply. If

you receive your medication at the hospital, make

sure you have contingency plans in place if bad

weather prevents you from getting to the hospital

EAT YOUR FRUIT AND VEGGIES: Dr Monica Marta

says she doesnt think winter tips for MSers are any

different from anyone else keep up

your fruit and vegetable intake over

the winter months (not including

chocolate oranges). There are fruits that

are in season now, like clementines and satsumas,

that are great for snacking. Root veggies like

parsnips can be roasted (yum!) souped up or even

made into a surprisingly yummy winter juice with

the help of some ginger and orange.

LASTLY ENJOY THEFESTIVE PERIOD!
http://shift.ms/magazine/2011/09/vitamin-d-your-questions-answered/http://shift.ms/magazine/2011/09/vitamin-d-your-questions-answered/http://shift.ms/magazine/2011/09/vitamin-d-your-questions-answered/http://news.bbc.co.uk/1/hi/business/4371186.stmhttp://news.bbc.co.uk/1/hi/business/4371186.stmhttp://news.bbc.co.uk/1/hi/business/4371186.stmhttp://shift.ms/magazine/2011/09/vitamin-d-your-questions-answered/http://shift.ms/magazine/2011/09/vitamin-d-your-questions-answered/


8/11

8

A CHANCE TO GET INVOLVEDRapidly Evolv ing MS Study

Imperial College London researchers aresearching for those with rapidly evolving MS(either highly active RRMS, or SPMS) to be

monitored in a range of areas includingvarious blood molecule levels, MRI-visiblelesions, quality of life and disability levels.Around 200 participants will be required andit is hoped that the findings will help witheasier access to clinical trials or improvedtreatment options. The data will alsohopefully help develop new diagnosticmethods for rapidly evolving MS and tools toaid the prediction of future disability levels.

For further information please contactJulius Labao:[email protected] 020 7594 6667

Sharing Experiences: Internet Use and

Mult iple Sclerosis

A study conducted by the University ofWarwick looking at how those affected byMS (patients, carers and those who workin MS-related areas) use the internet to

share their experiences. They will thenlook at how this affects their well-beingand health. Participation involves a one-hour telephone interview. To take part,you must have a link with MS and haveused the internet to share yourexperiences or find out about otherpeoples experiences.This research ispart of a project commissioned by the

National Institute for Health Research(NIHR). To find out more please contactFadhila Mazanderani on:[email protected]

Bladder problems in MS

An online survey, supported by the MSSociety, looking at the effect of bladderproblems on peoples daily lives if they have

MS. Its takes around 20-30 minutes tocomplete and participants can receive a 10Amazon gift certificate for taking part. Everycompleted survey will generate a 10 donationfor the MS Society. United BioSource of the USis running the survey. The firm gathersevidence to aid firms in the development ofhealthcare products and help people makehealthcare decisions. Hopefully the surveysfindings will help develop management and

treatment of bladder problems. For moreinformation please see:http://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problems andhttps://survey-us.yougov.com/vkbMyJpKbnhgWq

MS Society Tissue Bank

An MS Society-supported initiative to enable

people with and without MS to donate theirspinal cord and brain for MS research.

Samples are processed and stored to help

understand the causes of MS and the

development of effective treatments. The

Tissue Bank is the biggest MS-specific brain

donor initiative operating in Europe. For more

information contact: MS Society Tissue Bank,

Wolfson Neuroscience Laboratories, Imperial

College London, Tel: 020 7594 9734 or see

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

research/get-involved-research/ms-tissue-

bank

CLINICAL TRIALS

The MS Society maintains a list of clinical trials that are

currently recruiting participants. If you are interested please go

to:http://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialsor call 07593-238097
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemshttp://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemshttp://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemshttp://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemshttps://survey-us.yougov.com/vkbMyJpKbnhgWqhttps://survey-us.yougov.com/vkbMyJpKbnhgWqhttps://survey-us.yougov.com/vkbMyJpKbnhgWqhttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttp://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialshttp://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialshttp://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialshttp://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialshttp://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialshttp://live.mssociety.org.uk/ms-research/get-involved-research/get-involved-in-clinical-trialshttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttp://live.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bankhttps://survey-us.yougov.com/vkbMyJpKbnhgWqhttps://survey-us.yougov.com/vkbMyJpKbnhgWqhttp://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemshttp://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemshttp://www.mssociety.org.uk/ms-research/get-involved-research/research-studies#bladder_problemsmailto:[email protected]:[email protected]


9/11

9

A CHANCE TO GET INVOLVED

Costs o f MS in the UK

This is a study being conducted by

pharmaceutical firm Merck Serono and

aims to estimate what the cost and

burden is of MS in the UK. It will also look

at variations in costs/burden according to

whether people are on disease-modifying

drugs and what the impact is on carers.

The study involves the completion of a

10-20 minute online survey by people

with MS and/or their carers. It is open to

UK-based adults (over 18 years old) who

have MS and all adults (over 18 years

old) who care for someone with MS.

More information is available on the MS

Society website and the survey can be

found at:

http://www.surveygizmo.co.uk/s3/5580

04/UK-Multiple-Sclerosis-Survey

The Ko ffman Project

This is a project that aims to describe and

compare the experience of MS among

White British and Black Caribbeans in

London and identify those with advanced

disease that have needs that could

benefit from palliative care. It also seeks

to explore awareness of, attitudes to, and

preferences for advanced care, including

palliative care and related services

among Black Caribbean, White British

and Asian people with advanced MS.

Eligibility criteria to participate includes

being of Asian origin with a diagnosis of

MS, a member of Asian MS, over 18

years old and an EDSS score of 6.0.

Research sites include Kings College

Hospital, Queen Elizabeth Woolwich, and

the PCT covering Lambeth, Lewisham and

Southwark. Principle Investigators are Dr.

Jonathan Koffman (KCH) and Dr. Eli Silber

(QE).

The Koffman Project is set to end in May

2012, before which it is hoped that a further

eight Asians with MS can be recruited.

If you are interested and meet the eligibility

criteria, please contact one of the study

researchers, Cassie Goddard on 020 7848

5627 [email protected]

FUNDRAISING FOR

THE MS SOCIETY

Gold Challenge is part of the

official mass participation legacy for

London 2012, inspiring the nation to

take on a range of Olympic and

Paralympic sports whilst raising money

for charity. It is also a social enterprise

partnered with Sport England and theBritish Olympic Association. There are a

wide range of charity partners linked to

the initiative, with one of them being

the MS Society. People can choose one

of three sporting challenges in which to

complete, as a team or individually,

while at the same time fund raising for

their chosen charity. More information

is available at:

http://www.goldchallenge.org/
http://www.surveygizmo.co.uk/s3/558004/UK-Multiple-Sclerosis-Surveyhttp://www.surveygizmo.co.uk/s3/558004/UK-Multiple-Sclerosis-Surveyhttp://www.surveygizmo.co.uk/s3/558004/UK-Multiple-Sclerosis-Surveymailto:[email protected]:[email protected]:[email protected]://www.goldchallenge.org/http://www.goldchallenge.org/http://www.goldchallenge.org/mailto:[email protected]://www.surveygizmo.co.uk/s3/558004/UK-Multiple-Sclerosis-Surveyhttp://www.surveygizmo.co.uk/s3/558004/UK-Multiple-Sclerosis-Survey


10/11

10

LATEST RESEARCH & MS IN THE NEWSNatural intestinal flora involved in the emergence of multiple

sclerosis

http://www.healthcanal.com/immune-system/22460-Natural-

intestinal-flora-involved-the-emergence-multiple-sclerosis.html

FONAR Corp (FONR) Publishes New Breakthroughs in Multiple

Sclerosis

http://www.streetinsider.com/Corporate+News/FONAR+Corp+

%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+S

clerosis/6835287.html

Care for multiple sclerosis patients unchanged in five years

http://www.telegraph.co.uk/health/healthnews/8814345/Care-

for-multiple-sclerosis-patients-unchanged-in-five-years.html

Simvastatin study improves vision in optic neuritis

http://www.mssociety.org.uk/ms-news/2011/10/simvastatin-

study-improves-vision-in-optic-neuritis

Kelloggs to Add Vitamin D in Products to Address GenuineHealth Concerns

http://newstonight.net/content/kellogg-s-add-vitamin-d-

products-address-genuine-health-concerns

Saffron ingredient shows promise for fighting MS

http://www.emaxhealth.com/1020/saffron-ingredient-shows-

promise-fighting-ms

Coming Out: Two 30-something MS patients talk about their

experiences of being open (or not) about living with the

condition on BBC Radio 4

http://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_C

athy_Andrew_and_Emily/

Rare Gene links Vitamin D and MS (research by Dr. Ram)

http://www.bbc.co.uk/news/health-16086004

Opexa's Tovaxin for the

Treatment of Multiple Sclerosis

Granted Fast Track Designation

by FDA (potential treatment for

SPMS)

http://www.marketwatch.com/stor

y/opexas-tovaxinr-for-the-

treatment-of-multiple-sclerosis-

granted-fast-track-designation-by-

fda-2011-11-08

Multiple Sclerosis No longer a

Disease of the West: MSIF

http://www.indiaprwire.com/press

release/health-

care/20111114103292.htm

Genzyme Announces Successful

Phase III Results for

Alemtuzumab (LEMTRADA(TM*)) in

Multiple Sclerosis

http://www.businesswire.com/new

s/genzyme/20111113005072/en

Junior Giscombe talks about MS

and his daughter

http://www.dailymail.co.uk/health/

article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-

daughter.html

The deadline for the Spring

edition of the newsletter will be

29th February 2012. Please email

your news, stories, links andphotos to:

[email protected]
http://www.healthcanal.com/immune-system/22460-Natural-intestinal-flora-involved-the-emergence-multiple-sclerosis.htmlhttp://www.healthcanal.com/immune-system/22460-Natural-intestinal-flora-involved-the-emergence-multiple-sclerosis.htmlhttp://www.healthcanal.com/immune-system/22460-Natural-intestinal-flora-involved-the-emergence-multiple-sclerosis.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.telegraph.co.uk/health/healthnews/8814345/Care-for-multiple-sclerosis-patients-unchanged-in-five-years.htmlhttp://www.telegraph.co.uk/health/healthnews/8814345/Care-for-multiple-sclerosis-patients-unchanged-in-five-years.htmlhttp://www.telegraph.co.uk/health/healthnews/8814345/Care-for-multiple-sclerosis-patients-unchanged-in-five-years.htmlhttp://www.mssociety.org.uk/ms-news/2011/10/simvastatin-study-improves-vision-in-optic-neuritishttp://www.mssociety.org.uk/ms-news/2011/10/simvastatin-study-improves-vision-in-optic-neuritishttp://www.mssociety.org.uk/ms-news/2011/10/simvastatin-study-improves-vision-in-optic-neuritishttp://newstonight.net/content/kellogg-s-add-vitamin-d-products-address-genuine-health-concernshttp://newstonight.net/content/kellogg-s-add-vitamin-d-products-address-genuine-health-concernshttp://newstonight.net/content/kellogg-s-add-vitamin-d-products-address-genuine-health-concernshttp://www.emaxhealth.com/1020/saffron-ingredient-shows-promise-fighting-mshttp://www.emaxhealth.com/1020/saffron-ingredient-shows-promise-fighting-mshttp://www.emaxhealth.com/1020/saffron-ingredient-shows-promise-fighting-mshttp://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_Cathy_Andrew_and_Emily/http://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_Cathy_Andrew_and_Emily/http://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_Cathy_Andrew_and_Emily/http://www.bbc.co.uk/news/health-16086004http://www.bbc.co.uk/news/health-16086004http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.businesswire.com/news/genzyme/20111113005072/enhttp://www.businesswire.com/news/genzyme/20111113005072/enhttp://www.businesswire.com/news/genzyme/20111113005072/enhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlmailto:[email protected]:[email protected]:[email protected]://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.dailymail.co.uk/health/article-2066547/Junior-Giscombe-MS-robbed-soulmate-taking-daughter.htmlhttp://www.businesswire.com/news/genzyme/20111113005072/enhttp://www.businesswire.com/news/genzyme/20111113005072/enhttp://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.indiaprwire.com/pressrelease/health-care/20111114103292.htmhttp://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.marketwatch.com/story/opexas-tovaxinr-for-the-treatment-of-multiple-sclerosis-granted-fast-track-designation-by-fda-2011-11-08http://www.bbc.co.uk/news/health-16086004http://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_Cathy_Andrew_and_Emily/http://www.bbc.co.uk/iplayer/episode/b017lbqh/Coming_Out_Cathy_Andrew_and_Emily/http://www.emaxhealth.com/1020/saffron-ingredient-shows-promise-fighting-mshttp://www.emaxhealth.com/1020/saffron-ingredient-shows-promise-fighting-mshttp://newstonight.net/content/kellogg-s-add-vitamin-d-products-address-genuine-health-concernshttp://newstonight.net/content/kellogg-s-add-vitamin-d-products-address-genuine-health-concernshttp://www.mssociety.org.uk/ms-news/2011/10/simvastatin-study-improves-vision-in-optic-neuritishttp://www.mssociety.org.uk/ms-news/2011/10/simvastatin-study-improves-vision-in-optic-neuritishttp://www.telegraph.co.uk/health/healthnews/8814345/Care-for-multiple-sclerosis-patients-unchanged-in-five-years.htmlhttp://www.telegraph.co.uk/health/healthnews/8814345/Care-for-multiple-sclerosis-patients-unchanged-in-five-years.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.streetinsider.com/Corporate+News/FONAR+Corp+%28FONR%29+Publishes+New+Breakthroughs+in+Multiple+Sclerosis/6835287.htmlhttp://www.healthcanal.com/immune-system/22460-Natural-intestinal-flora-involved-the-emergence-multiple-sclerosis.htmlhttp://www.healthcanal.com/immune-system/22460-Natural-intestinal-flora-involved-the-emergence-multiple-sclerosis.html


11/11

11

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 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

Anisha Gangotra - Social Secretary

Mukesh Jethwa - Fundraising Officer

Abul Kamali - Website Officer

Rani Kaur - Publicity Officer/Support Officer

Shiv Sharma - Treasurer

MS Society Website:http://www.mssociety.org.uk

MS Society Helpl ine:0808 800 8000

MS Register: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.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.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 Winter Issue, 2011

Documents

Transcript of Asian MS Newsletter Winter Issue, 2011