asian ms newsletter issue 1, 2013
TRANSCRIPT
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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
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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
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] -
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Page 3 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales(07451571)TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 10 to 70070
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
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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)
http://www.youtube.com/playlist?list=PL
A05CD7CD6704250D(2011)
http://www.youtube.com/playlist?list=PL
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 -
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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 -
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(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
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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] -
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A CHANCE TO GET INVOLVED
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
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
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] -
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A CHANCE TO GET INVOLVED
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] -
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A CHANCE TO GET INVOLVED
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] -
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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
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] -
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Accessible caravan
The North Surrey MS Society branch has a two-bed accessible
caravan with full veranda and wheelchair ramp access, available for
holiday hire and based at Church Farm in Pagham, West Sussex.
The Rio Willoughby is a comfortable and stylish caravan specifically
designed with the needs of wheelchair users in mind. It has a
spacious lounge/diner, a kitchen with lowered work surfaces, a
bathroom with walk-in shower, and two bedrooms. Church Farm is a
5* Haven site with a great entertainment schedule and two
swimming pools.
For further information, please contact Caroline Keenan on 020 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
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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.
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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
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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
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] -
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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 -
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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] -
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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.
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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
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
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] -
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Page 22 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales(07451571)TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 10 to 70070
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 -
7/30/2019 Asian MS Newsletter Issue 1, 2013
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Page 23 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales(07451571)TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 10 to 70070
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]