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Asian MS Newsletter

ISSUE 3, 2015

.A Message From The

The year is flying by isnt it? I cant
believe were already talking about
flu jabs and preparing for the winter
time! The end of the year often brings new resolutions
and changes, and Asian MS is currently within a phase of
transition. We need your help to ensure we continue to
successfully carry out the much-needed work that we do
to raise awareness about MS among Asians and help
support Asians who have the condition. More information
can be found on p.3.
Theres been lots in the news recently about MS,
particularly regarding welfare support and early
treatment. Both have been covered in some detail within
this issue and could mean changes for you, so do check
it out.
Finally, I had the honour of being a guest speaker at an
MS Society reception at 10 Downing Street in September.
This was a fantastic event and an incredible privilege. I
mainly spoke about the need to get more people involved
in volunteering. Asian MS, as part of the MS Society, is
included within that. We need you!
~Trishna x


All the usual useful numbers and

Asian MS Needs You! Call for

Trishna speaks at Downing

MS Society campaigns update
a round-up

Contributors needed for the

Have you had your flu jab?
News and Happenings including
the Thames Walk challenge and Early
Treatment Consensus

Tea with Dee Dee chats with Zia


MS in the News
The latest research studies and

clinical trials

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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales

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.

Rani Kaur - Support Officer & Acting Chair

Mukesh Jethwa - Treasurer
Trishna Bharadia - Newsletter Editor
Abul Kamali - Website Officer


General and Membership Enquiries:

MS Therapy Centres:

Asian MS Website: (an online community for younger


Asian MS newsletters online:

MS Research Blog:

MS Society Website:

Carers Trust:

MS Register:
Map of UK public toilets:

The MS Helpline is available to give free and
confidential information 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.

For a list of all the MS Societys key publications
showing the latest editions and revisions, and to
order, visit the website:
There are also publications available in many of
the Asian languages including Bengali, Hindi,
Gujerati, Punjabi, Farsi and Urdu.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales


Asian MS is
currently in a
period of
change, with a number of committee members
planning to step down at the next Annual
Meeting. As a support group, we rely on
volunteers to keep going so we really need your
help so that we can continue to provide support
and information to people with MS within the
Asian community.

How does Asian MS provide support?

We have a
Support Officer
who is available
to chat with
members via
email or
telephone. We
also provide a
safe space for Asians with MS to discuss issues in
How is Asian MS run?
person and online through social gatherings,
The group is run by a committee of volunteers
information events and our private Facebook group. In
who meet in person or via tele/videoconferencing addition, we are able to offer a range of MS Society
every few months. If you sit on the committee
information booklets that have been translated into the
you will be expected to attend as many of these various Asian languages.
meetings as possible. If you are in one of the
more specialist roles, for example Treasurer, you We are a well-established, dynamic and successful
will need to demonstrate that you have the skills charity that has seen many of its volunteers and
necessary to be able to carry out this role to the members recognised regionally and nationally for the
best level possible. We are linked to the MS
work they have done within the world of MS. Trishna
Society and as such are bound by the MS
Bharadia, our newsletter Editor, has received a
Societys governance.
number of regional and national awards, including MS
Society Volunteer of the Year 2013, and was most
Why Asian MS?
recently seen on our TV screens in The Peoples
There are many MS charities out there that are
Strictly on BBC1, where she raised awareness about
calling for volunteers and we understand this. So MS on a massive scale. Amrit Gajjar, a long-standing
what is unique about Asian MS and why should
member, won the MS Societys Carer of the Year
you volunteer for us? We offer culturally
award in 2011 and Priyal Raja (member) and Rani
intelligent support, i.e. support that considers the Kaur (Support Officer & Acting Chair) were both
cultural issues that people with MS and disability shortlisted for MS Society awards in 2013 and 2014,
can face in the Asian community. If you volunteer respectively. We also have links with eminent
for us, you will be helping to increase awareness, neurologists, researchers and other charities.
reduce stigmatisation and provide education
about a condition that is not very well understood If youd like to join us in continuing Asian MSs
within this community.
fantastic work, please get in touch via
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales


Asian MS Newsletter Editor,
Trishna Bharadia, was given
the honour of being the guest
speaker at a reception which
the MS Society held for its
volunteers on 8th September,
hosted by Samantha Cameron
at 10 Downing Street.
This was an incredible event
that aimed to celebrate the
work of the Societys many
volunteers. People came from
all over the country and represented many aspects
of the Societys work. There were council members,
trustees, fundraisers, campaigners and helpline
staff, to name just a few. Also in attendance were
top MS Society staff members, including Chief
Executive Michelle Mitchell and Chair Hilary Sears.

She then handed over to Michelle Mitchell, who

thanked all the volunteers, past and present for
their hard work
and contribution
to the MS
Society over the
years. She went
on to speak
about the
Societys aims
for the future,
with the key message being that while there has
been a great deal of progress since the Society
was first established in 1953, there is still work to
be done because the end goal is to have a world
free from MS.

The response from all those present was fantastic

and Trishna was particularly praised for her
articulate, heartfelt and passionate speech. She
The event commenced with a drinks reception,
comments, speaking at Downing Street was
where volunteers were able to mingle and chat with definitely one of the proudest moments of my life.
each other, swapping stories and learning about
I had such an enjoyable time in the company of
what others had contributed to the Society in its over such wonderful and inspirational volunteers. It
60 years of existence. This was followed by the
goes to show just how important the volunteering
arrival of Samantha Cameron, who spent time
body is to the MS Society and its different
chatting with guests after having some official photos services. It was a truly wonderful evening that
everyone will remember for a very long time!
Mrs. Cameron introduced Trishna, after giving a brief
introduction on the MS Society and the work that it
does. Trishna spoke about what the future holds for
the MS Societys volunteering body, the challenges
that it faces and how we can move forward. She
particularly emphasised getting young people
involved in volunteering, the need to raise
awareness about MS among the non-MS community
and the need to have positive role models in the
public eye who are willing to talk about MS.

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Trishna has been part of Asian MS since

around 2010 and is also a key contributor to
MS Society initiatives on a local, regional and
national level. She was the MS Societys
Volunteer of the Year in 2013.

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales


General election 2015 what now?
More than 1,700 of you took part in the MS Societys
MS: Voice for
asking your
candidates to
support people
affected by MS
if elected. You sent almost 7,000 emails to candidates,
each one explaining what needs to change for people
with MS. Thank you!
Since then, the Society has been busy getting in touch
with successful candidates to discuss its priorities for
the next government. These include access to
treatments, disability benefits and ensuring everyone
who needs it is able to access social care.

However, thousands of people with MS are

struggling, and we know inappropriate criteria and
assessments prevent them from accessing the
financial support they need.
This is why, in September, the Society launched a
new campaign to change the welfare system: MS:
Enough make welfare make sense.
The campaign focuses on improving the welfare
assessment process for people with MS, including
ensuring assessments take
into account invisible
symptoms like pain and
chronic fatigue, as well as
campaigning for an end to
the 20 metre rule for Personal Independence
Payments (PIP).

The Society has also been helping to re-establish the All

Party Parliamentary Group (APPG) on MS, a group of
MPs and Peers with an interest in issues affecting
people with MS. Some have personal experience,
others dont, but over the course of the new Parliament
the Society hopes that this group will be a strong voice
for people with MS.

As the campaign progresses, the MS Society will

be challenging negative stereotypes of benefit
claimants, and campaigning to ensure everyone
with MS who wants to work and is able to,
receives the support they need to do so.

MS: Enough
Building on the success of MS: Voice for Change, the
MS Society is already preparing its next campaign.
Our welfare system doesnt make sense for people with
MS. Living with a complex neurological condition like
MS is hard, and shouldnt be made harder by financial

To sign the petition go to:


To sign up for updates on the campaign, make

sure youre part of the MS Societys online
Ensuring the new government makes the right decisions campaigns community:
for people with MS will remain the Societys priority.

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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales


Where do the funds go?
Asian MS is funded purely by
donations, which are
used for various
purposes. They include
holding information and
social events,
contributions to research projects, and
administration costs.

The Amiloride and Phenytoin projects

Asian MS has donated 1,500 to the Amiloride and
Phenytoin projects, both of which are drugs that
are being tested in clinical trials for use in MS.
Amiloride is a high blood pressure and congestive
heart failure treatment that has been in use for
over 30 years. It could also have a neuroprotective
and myeloprotective effect. Phenytoin is an
epilepsy drug that has been in use for over 60
years. It is being tested to see if it can protect the
optic nerve in people with optic neuritis and,
therefore, prevent nerve damage in MS.

Asian MS is proud to announce that they now have the facilities to allow people to make donations
in an easier and quicker way.

Donations by credit card via the internet site

How to make donations by text message :

Send a text message to 70070
Remember to include the subject of the text: as AMSS89
and send it with the amount you wish to donate up to a maximum of 10
If you wish to donate 10 your message would read AMSS89 10
If you wish to donate 5 your message would read AMSS89 5 and so on.
You may donate with any number from 1-5, and the money will go directly to the MS Society, which
will transfer the cash generated to Asian MS. We at Asian MS then decide how to allocate the

You can also raise funds every time you shop through EasyFundraising:

We thank you kindly in advance for your support

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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales




Experts from around the world met in London in June

for the MS Societys MS Frontiers conference. MS
Frontiers is an opportunity for researchers,
neurologists, clinicians and health professionals to
present their latest work, share ideas and discuss key

An introductory offer for new guests with

Multiple Sclerosis at the Calvert Trusts Kielder

There was a huge array of topics being discussed,

from the progression of disability and finding new ways
to measure it, to personalised treatments and new
rehabilitation technologies. Scientists were on hand for
a lively debate about stem cells and their potential
involvement in the future of MS treatments.

These weekends are an ideal opportunity to make

new friends, try new things and enjoy great food.
With a variety of activities to choose from, your
stay can be as action packed or as relaxed as you
wish it to be.

Friday 6th - Monday 9th November 2015

If youd like to find out more about what happened over Choose from:
the two days go to:
Respite Care Stay 350
(for over 18's who require care, usual price 530)
Independent Stay 225
(no care required, usual price 315)


Asian MSs very own Trishna Bharadia was the face of

the MS Societys June fundraising appeal about
fatigue. It was sent to
75,000 people and
has raised around
120,000. The
money will be used to
fund research into fatigue, one of the MS Societys top
three research priorities. Trishna was asked to be part
of the campaign following her appearance on The
Peoples Strictly on BBC1 earlier this year, where
viewers saw how she tries to manage fatigue whilst still
living a full and active life. For more information on
fatigue and the research being undertaken, go to:

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Both packages include accommodation, activities

and all meals. Respite also includes all personal
care/assistance from the care team.
These special rates apply to new guests visiting
the centre.
For further information and to book, contact
the Guest Services Team on 01434 250232.

On the Asian MS Facebook Group were

talking about tecfidera and hair loss,
amantadine for fatigue and making
friends with Asians who have MS, among
other things. Come and join us!

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales




On 27th September, over 700 people turned out for the

#ChallengeMS Walk.
What has now become
an annual event for the
MS Society saw walkers
donning their orange
MS Society t-shirts and
walking either a 20km
Ramesh, Ila and Trishna walking with
route from the Cutty
Oritse Williams (of JLS fame) and his
Sark to Battersea Park
mum Sonya, Janis Winehouse (Amy
Winehouse's mum) and Stuart & Marie
or a 10km accessible
Nixon (MS Society stalwarts!)
route from Tower Bridge
to Battersea Park, along
the River Thames in London.

There has been a significant step forward towards

changing the wait and see culture among
healthcare professionals when it comes to treating
MS. The MS Society is calling for neurologists to
embark on early treatment and improved
monitoring plans for people with relapsing
remitting MS, following a paradigm shift in the
understanding of the condition and how early
treatment can slow disability and progression. The
call comes as the Society publishes a
breakthrough medical consensus paper in
partnership with leading MS experts and patients,
showing that MS can be continually destructive
from the outset, regardless of whether clinical
symptoms are being experienced.

It was a fabulous day, the sun was shining, and there

was even a steel band, food stalls and fairground
games to greet the walkers when they reached
Battersea Park. Asian MS
members who walked included
Janita Patel and her Dad Dilip
Gokal, and Ila and Ramesh
Gangotra with their daughter
Trishna Bharadia. Janita did
particularly well considering
shed completed the Shine Walk
the previous night. When on
Janita and Dilip looking great
in orange!

earth did she get some sleep?!

All money raised for

ChallengeMS goes towards MS research and you can
still donate to Trishna and Janitas JustGiving pages:

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The MS Society paper Time to Act includes a call

for fast and accurate diagnosis; a treatment plan
to be agreed with RRMS patients within six
months of diagnosis; a thorough patient review at
least once a year, including an MRI scan; and
patients to be given the skills and confidence to be
involved in co-decision making about treatment.
The paper comes ahead of the presentation of a
new global report Brain health: time matters in
multiple sclerosis by Professor Gavin Giovannoni
(Barts and the London), which stresses the need
to preserve brain tissue in MS patients and to
maximise long-term brain health by reducing MS
activity. It also talks about benefits of early
treatment and recommends regular monitoring of
disease activity.
For patients, this might mean you need to have a
chat with your neurologist to ensure youre getting
the correct treatment and monitoring. More
information can be found here:

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales



The Asian MS newsletter

needs contributors for
future newsletters. Following
a discussion on the Asian MS
Facebook group, it has come
to light that many of you want
to see some quite large topics to be covered in
future editions of the newsletter. In order to
cover these, we need people who are willing
to come forward, share their stories, and
potentially write articles for the newsletter.

People with MS are eligible for a free flu jab on the NHS.
These are normally administered in your GPs surgery,
with flu vaccination clinics usually commencing in around
mid-October. If you have never had a flu jab or are newly
diagnosed, speak to your GP, MS Nurse and/or
neurologist about this. The flu jab is an inactive vaccine so
it is generally safe for people with MS. However, if you are
on any drugs, whether they be disease modifying drugs or
symptomatic relief treatments, you need to speak with a
medical professional to ensure there will be no negative

If you are interested in writing for the

newsletter, please contact Trishna via the
Asian MS email address: and use the
subject heading Asian MS Newsletter
contributions. The email will need to include
an outline of the story that you would like to

Its important to get your flu jab as soon as possible. Dont

wait for there to be a flu outbreak before you get your shot!

If you have a story to share then please do

also get in touch. We are particularly
interested in hearing from people who are
willing to share their stories on relationships
and MS and local meet-ups (particularly in
areas where there is a high presence of
Asians with MS). Contributors can remain
anonymous if they wish.
Plus, if there are any topics that youd like to
see covered in future editions then do let us
know and well see what we can do!

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For more information, please visit:
NB: If you are considering starting immunosuppressive
therapy (e.g. Tysabri, Lemtrada, Gilenya), check with your
neurologist whether there are any vaccinations that are
recommended before the commencement of therapy,
particularly if you frequently travel abroad to the Indian
sub-continent or Africa. Some vaccinations are unsuitable
for people on immunosuppressants because they are live
vaccinations, so it is often recommended that they are
taken before commencing therapy, if travel to at risk
areas is forecast in the future.

Dont wait for a

flu outbreak to
get your shot!

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales


~ Dee Popat has chai and a chat with our members
How are you all doing? I want you to join me to say
congratulations to our fellow MSer, Zia, who recently
gave birth to the adorable Luca-ali. I wanted to know
about Zias journey and feelings through her pregnancy
and she kindly agreed to share her experiences. I am
sure that there are many mothers who can relate to
Zias feelings and if any of you would like to share your
stories or achievements, please do get in touch with me.
As always, I continue to search for people to share their
stories, so if you have MS or know someone who does
and would like to share your story, please email either
myself (on Facebook) or Trishna. Looking forward to
hearing from you.
Dee x
Name: Zia Rehma Hussein
Marital status: Married
Occupation: Clinical
Nutritionist and Mother
How long had MS: 16yrs

pregnancy might have on it. Im just glad we finally

went for it as I couldnt imagine our lives without our
son Luca-ali.

What support did you have from family, friends and

professionals? Our families and friends were so
supportive and happy for us as they knew it was what
we wanted for so long. My health care professionals
What was your initial reaction to being
were also pleased for us, especially my MS nurse who I
diagnosed with MS? How did you feel? It tore had consulted a few years ago about having MS and
my whole world apart! I was in my final year at
getting pregnant. I received extra care from the
university and planning my career. My initial
midwives and was quickly referred to the obstetrician
symptoms of optic neuritis and loss of sensation
for frequent checkups and birth advice. To be honest, I
in my hands meant that I wouldn't be able to carry was well looked after throughout and didnt feel alone
on with fashion design and to me that was all I
or misguided in any way.
wanted to do from a young age.
How did you feel through your pregnancy? The first
How old were you when you were diagnosed? trimester was tough. I was tired a lot and lacked energy
I was 20.
which made me spend my time sleeping or eating as I
was hungry all the time! I was told by the second
How did you feel when you found out you
trimester that things would improve and thankfully they
were pregnant? So happy My husband and I did. I started feeling over energetic and just generally
always planned to start a family but we were
fantastic. I should say that throughout my pregnancy
mindful of my health and the impact the
my MS stayed the same. Symptoms didn't alter or
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales

improve and I was happy with that. I was always

concerned that things could get worse due to the
unpredictable nature of MS. By the third trimester I had
put on a lot of weight due to a healthy sized baby bump
and found my physical capacity limited. Walking was
slow and hard (I use 2 walking sticks and managed not
to rely on a wheelchair) and I was still able to carry on
with my rehabilitation classes of yoga and pilates right
up to the last month of my pregnancy.
If you experienced certain feelings before, during
and after your pregnancy, how did you manage
them i.e. did you talk to others, use Google or call a
professional etc? I had the care of professionals every
step of the way so any worries, questions or feelings
were addressed straight away. I really wanted to enjoy
my pregnancy and for it to be as stress- and worry-free
as possible. I read a few books on being pregnant which
helped so I could monitor my progress and I did a lot of
my own research via the internet and watching YouTube
videos on how to breastfeed, bathe a baby etc

What were your initials thoughts when you saw

Luca-ali for the first time? Haha, I thought he
looked like a little goblin! He was so pale and had
lots of gunk over him as he had just come out. As
he was handed to me and put on my chest I
started to cry with happiness I couldnt believe
he was finally here.
Any special message for other people with
MS? Dont let MS dictate the course of your life.
Live life as best as you can and be flexible with it.
For information on MS & pregnancy:

Are there any particular experiences about being

pregnant that you would like to share with us? I
want to say that it was life changing; the feeling of being
responsible for a new life was overwhelming. I felt
blessed and so privileged to have been given this
precious opportunity.

MuMS UK is a supportive Facebook group for

mums who have Multiple Sclerosis and live in
the UK. The group is open to mums, mums to
be and ladies who are planning on starting a
family, who have been diagnosed or are under
investigation for Multiple Sclerosis. When
requesting to join please check your 'others'
What advice, if any, can you give to anyone who has messages as the admin might have sent you a
MS and is planning to have a baby? Just go for it!
message. The initiative won MS Digital Media
Look after yourself beforehand and during the
of the Year at the 2014 edition of the MS
pregnancy by resting as your body dictates. It is very
Society Awards.
important to eat well. Also throughout, take care
of yourself emotionally and physically as much as
possible. Most of all enjoy the experience!
How was your general health through the
pregnancy? It was really good. I had no problems or
complications (although everyones pregnancy is
different like everyones MS). I think keeping my stress
levels down helped me and my baby, as he is very calm
and good natured.

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If you are thinking about having children

then do consult your neurology team
and/or GP as you may need to be taken off
any medications you are on.

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales

Research studies that are currently running are
listed below. For more information on any of these
studies and clinical trials, please visit the MS
Societys research page at:

Investigating physiotherapy and rehabilitation

services for people with progress MS (and MS
Register survey), University of Glasgow: Will
explore how people with progressive MS feel
about current physiotherapy services, including
how worthwhile they think it is and how these
services vary across the UK. Participant must be
registered with the UK MS Register and those with
progressive MS will receive an email notification
when the survey is live. They can then complete
the survey online via the UK MS Register website.
The survey will launch in August 2015 and will be
live for three months. Contact Eve Campbell for
more information on

The MS Society Tissue Bank allows both people

with and without MS to donate their brain and
spinal cord tissue after their death, helping
researchers to understand MS damage and find
more effective treatments. For more information
please visit:

SIMS Systemic Inflammation in MS study,

University of Southampton: Will seek to find out if
there is a link between infections and the
accumulation of disability in MS. Lasting 2.5 years
overall, participants will be asked to provide weekly
urine samples, record any infections, attend a clinic
at Southampton General Hospital once every 3
months (involving neurological tests and possibly
urine and blood sample collections), a home visit
every 6 months by a member of the research team
to monitor physical activity (you will be asked to
wear a monitor for a week for this too) and two MRI
scans (one at the start and one at the end of the
study). Participants must have progressive MS and
should still be able to walk, with or without walking
aids. For more information contact the research
team at or 023-8120 5340.

Cognitive Rehabilitation for Attention and

Memory in people with MS (CRAMMS),
University of Nottingham: This trial is designed to
find out whether attending a series of ten group
cognitive rehabilitation sessions, compared to not
attending such groups, reduces the impact of
memory problems in daily life for people with MS.
The study is currently running in and around the
Nottingham, Sheffield and Liverpool areas, and will
soon be starting up in Bristol too. People in those
geographical areas are invited to participate.
Although some recruitment has already taken place,
the study needs 400 people altogether so people
with MS who have memory or attention problems
are asked to join. For more information contact

The UK Clinical Trials gateway allows you to

Have you registered with the MS Register yet? Its search for clinical trials and studies related to MS.
quick, easy and will help to form a picture of MS in Type multiple sclerosis into the search box:
the UK!
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales


Low vitamin D levels linked to increased multiple sclerosis risk
Exclusive breastfeeding should be supported in women with MS
Novartis to buy experimental MS drug from GSK in $1bn deal
Laser technology helps disabled people in Israel make music with their bodies
Neurologists warn against potentially dangerous stem cell tourism
Global Multiple Sclerosis Drugs Market, 2014-2020: U.S. represents the largest market
Merck KGaA to try again to get approval for MS pill cladribine
It's OK to ask for an atraumatic needle reducing the risk of post-lumbar puncture headaches
Assisted dying bill overwhelmingly rejected by MPs
Melatonin could help treat multiple sclerosis
Eddie Murphy and Oprah Winfrey confirmed to star in Richard Pryor biopic
Smoking Accelerates Disease Progression in Multiple Sclerosis
New Genetic Risk Factors for Multiple Sclerosis Identified in Study
New Study Unravels How Myelin is Repaired, May Suggest New MS Treatments
Wheelchair Athlete With MS Competes to Stay Active
Shemar Moore Shares His Mother's Battle with Multiple Sclerosis: 'She's My Super Woman'
Clinical Studies of Cannabinoid Capsules for MS Expected Later This Year

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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales