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Transcript of Asian MS Newsletter Spring Issue, 2012
7/30/2019 Asian MS Newsletter Spring Issue, 2012
http://slidepdf.com/reader/full/asian-ms-newsletter-spring-issue-2012 1/13
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
Spring Iss ue 2012
Asian MS –
Newsletter
EMERGING THERAPIES – A CLOSER LOOK
*****************************************************************Editor’s Note - Asian MS was very lucky to have Prof.David Baker from the Neuroimmunology team at Bart’s and The London Group give a talk about emerging
therapies at our annual social in November 2011 (see Winter Edition). As a follow-up, he has provided us with a closer insight into what’s happening in the world of MS therapies.
*****************************************************************
The current standard disease-modifying therapies arethe beta interferons and glatiramer acetate. These arenot hugely effective and have to be frequently self-
injected. At the beginning of 2011, we had the reallyexciting prospect of theintroduction of five new oralpills for the treatment of MS,that promised to be more
effective than the current standard therapies. Gilenya
and Moveco were the leaders of the pack and showed
twice the effectiveness on treating relapses compared
with the standard therapies.
Moveco was first to the regulators and was licensed for use in MS in Russia and Australia. This drug was takenfor a week each year over two years. However, someconcerns of cancer risks meant that regulators wantedmore safety information in the USA and Europe. Rather than more studies, the company decided to stop further development and withdraw the drug. They did thisbecause they thought that they would be too far behindthe success of Gilenya. That drug, taken daily, blocks
white blood cells from entering the blood andtherefore the brain, and was approved for use inthe USA and Europe.This has become the firstlicensed oral pill for the treatment of MS. This
was good news, but the price could be a catch.The company has charged so much for the drugthat it was not approved by the National Instituteof Clinical Excellence (NICE) in the UK. Thishas hindered its progress towards the NHS.Despite some wheeling and dealing, it has stillnot overcome this hurdle. Very recently therehave been some unexpected deaths occurringshortly after taking the drug. The jury is still out
on whether these effects are related to the drugor due to chance, but this could influence if andhow the drug is used in the future. This has puta dent in the progress of oral pills.
More disappointing news is that another of the
pills will fall by the wayside, as Laquinimod was found to be less effective than beta
interferon. Teriflunomide has not fared much
better, but is at least as effective as theinterferons. An application for approval for usein MS is now being sought. It may therefore
have the benefit and thelow side-effect profile of interferons but withadded benefits of beinga pill.
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Page 2 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
Another pill, currently called BG-12 , has been found to
be twice as effective as the interferons, and so far hasbeen found to be relatively safe. A version of this drughas been used for many years for the treatment of psoriasis and so let us hope that no unexpected side-effects appear. Importantly this drug may have thepotential to have an effect on progression. This has yet
to be formally tested but this is on the way no doubt.
Also, in the not too distant future, Lemtrada will appear
on the scene. This is an antibody which kills white bloodcells and is highly effective at stopping relapsing diseaseand can be over three times as effective as theinterferons. This is given as a short course, like Moveco.Whilst there are some side-effect issues, people takingthis drug over ten years have never had another attack.
Therefore there are significant in-roads in controllingrelapsing MS. A number of other drugs such as
Ocrelizumab are in late stage testing and were much
more effective than interferons in earlier small-scaletrials.
There is also great activity surrounding progressiveMS. Gilenya is currently on trial in primary progressive
MS and another trial with Tysabri, which is very effective
in treating relapses in MS, has been started inprogressive MS. Other late-stage ongoing trials includeOcrelizumab, a B-cell depleting agent, and
Dronabinol , a drug in cannabis.
There are also a number of smaller trials with severalother drugs - too many to mention. There are plans inplace for major studies to treat progressive MSthroughout the UK, but details of this have yet to be
officially announced.
Sativex , which is medical cannabis, has been licensed
for the treatment of spasticity in the UK, although theHospital Trusts are finding it difficult to get this funded.There are a number of other anti-spastic agents such as
slow-release baclofen that may last the night and are
in late stage trials. Fampyra is a new drug that can
improve walking and has just been approved within
Europe. There are other studies ongoing with different
symptom control drugs but they are some wayfrom being prescription drugs. Likewise, it isgoing to be some time before drugs that treatmyelin loss are on the market. However therehave been some significant inroads indiscovering factors that promote repair. This willneed to be tested in trials but one of these,
called anti-LINGO , has been in its first tests inhumans after successful animal studies. Thereare more drugs like this in the pipeline and trialson stem cells are in progress.
So whilst progress is not fast enough, I believethat progress is indeed being made. We aregetting better and better at treating relapses andattention is really being focused on progressive
MS. ~Prof. David Baker ******************************************************Editor’s Note – If you are faced with the decision of which drug to take (if any), it can be a daunting task looking through all the information available in terms of relative risks and benefits. Your neurologist and MS Nurse will be able to advise you on what may be the most suitable therapy for you. However, there
is also a wealth of information available online. Please see the links below:
…...…STOP PRESS……..STOP PRESS……… Since this article was written, NICE has said that
it will recommend that the NHS can prescribe
Gilenya to MS’ers who have continued to relapse
even after being on a first-line drug (beta-
interferon or glatiramer acetate):
http://www.mstrust.org.uk/news/article.jsp?id=5275
http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/disease-modifying-drugs-dmds
www.mstrust.org.uk/atoz/drugs.jsp
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/397
http://www.msdecisions.org.uk/
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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 Editor
Spring has finally sprung! As I write this the
sun is shining and the daffodils have finally
made their “proper” appearance (not covered
in snow, as in February!) It’s also time for the
Spring Issue of Asian MS’s quarterlynewsletter.
The next few months are jam-packed with
MS-related events and there is plenty for you
to get involved in, if you so wish. MS Life in
Manchester promises to be fantastic,
blending lifestyle-, medical- and research-
related talks, information and workshops for
MS’ers and their carers, family and friends.
Asian MS will be holding a workshop onSunday 15th April from 2.45pm to 3.15pm so
please do come and see what we’re about.
We would also like to encourage members
and non-members alike to attend our Annual
Meeting on Saturday 19th May. In an effort to
try to engage people from outside of London,
we have decided to hold the meeting at
Maidenhead Town Hall, Berkshire, thanks to
the kind donation of the facility by the Mayor
of Maidenhead. Running from 12-4pm, this
will be a great chance to meet the committee,
socialise, listen to some great speakers and,
as always, have a bite to eat!
I would also like to encourage everyone to
complete the feedback survey, information for
which is opposite. Asian MS and this
newsletter is for YOU. We would like to knowwhat you would like to see more of and any
ideas you may have to keep this newsletter
fresh and informative.
Enjoy this edition and please
pass it on to anyone who you
think may be interested in our
work. Hopefully see you all
soon in Manchester or
Maidenhead.
CONTENTS
-Emerging therapies – a closer look….p.1-2
-Welcome; Feedback survey ….p.3
-Your views on the new DLA; Lunch & Learn
at Genzyme; MS Society Awards….p.4
-A chance to get involved in surveys,
research and clinical trials…..p.5 -6
-Key dates for your diary….p.7
-Travelling in a wheelchair; Asian MS thanks
Yonex….p.8
-MS-friendly holiday breaks; Bart’s Research
Day….p.9
-General information and literature….p.10
-Latest research and MS in the News….p.11
-Fundraising for Asian MS….p.12
-Useful information and contacts….p.13
FEEDBACK NEEDED!
Asian MS would like to receive your
feedback about our quarterly newsletter. If
you receive an online version of the
newsletter you will automatically be sent a
link for an online survey. We would
appreciate it if you could complete the
survey by Monday 23rd April
2012. If you receive a
hard-copy version of this
newsletter please go to
the following link to
complete the survey:
http://www.surveymonkey.com/s/88HDQL6 ~The Editor~
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Page 4 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 CHANCE TO GET INVOLVED
YOUR VIEWS ON THE NEW DLA
Personal Independence Payment (PIP) is to
replace Disability Living Allowance (DLA). From
2013-15 everyone on DLA will be reassessed for
the new benefit.
Now is our chance to shape what the new test will
look like. The Government is currently consulting
on the assessment criteria that will be used for the
new benefit. The MS Society wants to know your
views on how this will work for people with MS.
Find out more and respond to the Government
consultation at: (deadline 30th April)www.dwp.gov.uk/consultations/2012/pip.shtml
If you’d like to contribute to the MS Society’s
response, please contact Hayley Jordan at
[email protected] or 020 8438 0753.
********************************************
In February, Asian MSmember, Trishna, spoke at a“Lunch & Learn” event atGenzyme’s offices inOxford. Genzyme is thepharmaceutical firm behindthe MS drugs Alemtuzumab
and Teriflunomide. Theevent aimed to increase theknowledge and awareness
of MS among Genzyme staff. Trishna spoke abouther MS journey, including diagnosis, treatment andmanagement. Speaking alongside her was an MSNurse and a representative from the MS Trust.The event generated a great deal of positivefeedback, with attendees saying that they had
learnt many new things about MS and the way itcan affect people.
MS Society Awards
The MS Society Awards highlight the
achievements of MS’ers, their families
and carers, and the professionals who
make a difference to people living with
MS.
If you know someone that has made a real difference
to the lives of people affected by MS this
year, whether it's a fundraiser, carer or MS
professional, the MS Society wants to know about
them!
The Award Categories are: MS Research of
the Year; MS Employer of the Year; MS
Media Coverage of the Year; MS Volunteer
of the Year; MS Fundraiser of the Year;MS Carer of the Year; MS Young Person of
the Year; MS Professional of the Year; and
MS Inspiration of the Year.
Please note:
You may nominate someone else, or self-
nominate
Nominations from all areas of the MS
community are encouraged
Paid employees of the MS Society cannot enter
but may nominate entries for the MS Society
Awards
Members of staff who have undertaken
volunteer work outside their paid job should
seek advice about eligibility to enter from
Category Champions
Full judging process details can be found atwww.mssociety.org.uk/awards
Independent work that has been funded, but not
undertaken, by the MS Society is eligible for
entry.
You can contact the MS Society Awards team on
01494 671332 or email
Closing date for entries is 20 th April 2012
Lunch & Learn Event at Genzyme
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Page 5 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 CHANCE TO GET INVOLVED
The MS Society needs your help
The hard work put in at a local
level in partnership between
branches, volunteers and staff at the MS Society
has contributed towards protecting 12 specialistnurse, physiotherapy and occupational therapy
posts across the UK and ensured that people with
MS have access to the specialists they need.
In 2012 it is important that there continues to be
active collaboration with decision makers locally,
where MS services are under threat or are being
reviewed, and make sure we seek the best
outcome for people affected by MS. If you hear of
any planned changes to roles or services then
please get in touch with your local Service
Development Officer to discuss.
Clinical Trial for Secondary Progressive MS
Ascend is a Phase III trial for 850 people across15 countries that will look at how effective
natalizumab (Tysabri) is in secondary progressive
MS (SPMS).
The trial aims to test if the drug will halt the
inflammation in the central nervous system that
causes nerve damage and, therefore, slow down
progression of the disease.
To be eligible you must never have had
natalizumab treatment before. Participants will
receive either 300mg of the drug or a placebo via
intravenous infusion every four weeks for 96
weeks.
Other criteria to be eligible includes being between
18 and 58 years old and you must have had adiagnosis of SPMS for a minimum of two years.
You must also have an EDSS score of between 3.0
and 6.5.
There are various UK trial centres, with some of
them currently recruiting (Liverpool, Manchester &
London). The study is forecast to be completed by
December 2014. If you are interested then get in
touch with your neurologist or email:
Carers needed for online questionnaire request
Laura Kelly, a PhD
student is looking to
explore how sharinghealth experiences online
affects people. The research aim is to find how best
to incorporate people’s experiences into health
websites. Therefore, a questionnaire is being
developed asking people about sharing their health
experiences online. Feedback is being sought as to
whether the questions are understandable and
accurately reflect the effects of sharing healthexperiences online for carers of MS patients.
To be eligible, you must care for someone with MS,
be aged over 16 and have internet access (in order
to complete the questionnaire). You must also be a
UK resident.
Participation will take up to 20-25 minutes and
involve answering questions about general views onhealth websites, as well as questions on a specific
health website that will be given.
For more detailed information about participating in
this research please go to:
http://www.publichealth.ox.ac.uk/research/hsru/
ehealthms
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Page 6 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 CHANCE TO GET INVOLVED
TELL YOUR STORY
~Volunteers wanted to share their story
The press office at MS National Centre is
looking for willing volunteers who areinterested in sharing their experiences of MS
with the media.
With MS Week, Carers Week and MS Life
coming soon, and the Welfare Reform Bill
currently going through Parliament, the views
of people with, and affected by, MS are more
important than ever.
Using stories from people affected by MS, theywant to raise awareness of the condition and
the issues and challenges that people face.
In particular they’re looking for people who
can talk about:
MS Life – are you attending MS Life in
Manchester on 14th – 15th April? Have
you benefited from attending before? Do
you live in the North West? If you wantto help raise awareness of the event then
please get in touch.
MS Week – we’re looking for people who
embody the ‘Get Active’ theme. Get in
touch to say how you have Got Active.
Carers Week – do you care for someone
with MS? Or do you have MS and care
for someone else? The theme for this
year’s Carers Week is ‘in sickness and in
health’ and the press office isparticularly interested in hearing from
people who have a health condition
themselves, but is also a carer.
Social care – are you struggling to access
the social care and support you need to
live your life? Share your story.
To contact the press office please email
QoL Tool Trial
LifepsycholQoL is a new tool that has beendeveloped to help people communicate how their quality of life (QoL) is being affected by the longterm conditions(s) they are living with. It has beendeveloped by Innervate Ltd., who is looking to offer
up to 20 people with MS a chance to trial the tooland give their feedback.
LifepsycholQoL is available either as an electronicdial (accessible online) or as a hand-held dial.Initially, the hand-held dial will be tested first, with achance to trial the electronic dial afterwards. Thedial aims to capture important information abouthow your long term condition affects key issues e.g.
relationships, fatigue.
If you would like to test the dial then please contactDr. Neil Bindermann at Innervate Ltd via:[email protected]
***********************************************************
Carers Week 2012: Survey n ow
open
The MS Society is a partner in this year’s CarersWeek: 18 - 24 June 2012.
The theme this year is “In sickness and in health”.What are your experiences of caring? How muchdoes your caring role impact on your health andwellbeing? Are you worried that the Government’scuts will make you shoulder more of theresponsibility? Are you already feeling the effectsof cuts to local services? If so, they’re keen to
hear more. Even if you’re not affected by the cuts,they want to hear about that too!
The nine charities which make up the CarersWeek partnership have opened the annual surveyfor 2012. Go towww.surveymonkey.com/s/carersweek2012 togive your views.
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Page 7 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
EVENTS
KEY DATES FOR YOUR DIARY
Asian MS Annual Meeting The Asian MS Annual meeting will take place on
Saturday 19th May 2012 at the DesboroughSuite at Maidenhead Town Hall, St Ives Road,Maidenhead, Berkshire, SL6 1RF. It will run from12pm until 4pm. The provisional agenda is12pm-1pm Annual Meeting, 1pm-2pm Speakers(to be confirmed), 2pm-4pm food and social. Wewould like as many people to come to this aspossible – members and non-members arewelcome, although only members will be able to
vote on committee nominations. If you would liketo stand for a committee role, please contact Asian MS. Information will be sent out tomembers so look out for it! The Town Hall is fullyaccessible and is a short distance fromMaidenhead train station, which has goodmainline connections. Please do come and showyour support and have a good time.
Cake Break 2012 The MS Society isencouraging people to participate in its biggest community event of thisyear - Cake Break 2012.Every branch across the UK is being encouraged to take part.
Celebrity chef Ainsley Harriott will be the face of
Cake Break 2012. The event launches on Friday 4th May . Online registration starts from 16 th January at www.mssociety.org.uk/cakebreak
You can also register by phone to receive a hard copy of the fundraising pack by contacting MitaVaghji (Community Fundraiser) on 020-84380737 or [email protected]
14th-15 th April 2012 MS Life, Manchester The largest event in
Europe for peopleaffected by MS. It willinclude research talks, workshops, lifestyle events andan exhibition. The theme for MS Life will be “Get Active,” whether it is being physically active, gettinginvolved in your local branch or making a donation. It isabout making a positive difference to your life or thelives of people affected by MS. To book your free placefor MS Life please go to:
www.mssociety.org.uk/mslife
MS WEEK 2012 will be
30th April – 6th May! How will
you help raise awareness?
Asian MS will be present at
MS Life so come and say hello!
We will be holding a workshop
on Sun. 15th April from 2.45pm-
3.15pm. There will also be achance to meet volunteers
and committee members and
take part in some fun
fundraising activities!
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Page 8 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 GUIDE TO TRAVELLING
SAFELY IN A WHEELCHAIR
Moving into a vehicle safely
Before moving someone into a vehicle it is
important that a lap belt is securely in place to
prevent falls.
Once someone using a wheelchair is in the minibus
ensure that the person and the wheelchair are
safely and correctly secured in the vehicle.
Manufacturers’ guidelines should be followed as
vehicles and wheelchairs can differ.
If someone is able to transfer from their
wheelchair to vehicle seat easily, painlessly and
without assistance they should do so, as this is
safer and more comfortable.
Fitting a wheelchair lap belt correctly
Ensure a correct sitting position (i.e. fully
back in the seat), and that the pelvis is as
upright and symmetrical as possible.
Position the lap belt so that the hip bones
can be felt above the belt.
Adjust the length of the lap belt so that
there is just sufficient room for your hand
to slide between your body and the belt.
Pass the lap belt down between the user
and any side panels on the wheelchair, not
over the armrests. It should fit firmly across
the pelvis, not the abdomen.
Do not allow lap belts to ride up onto the
abdomen where they could cause internal
injury in the event of a collision, or fromwhich the passenger might slide out.
Fitting vehicle sash belts
A sash belt should always remain in contact
with the shoulders of the wheelchair user,
lying snugly across the pelvis and fitting
inside the framework of the wheelchair or
seat.
Fit the shoulder strap(s) comfortably across
the collar bone (not across the throat orneck).
For more information,
please contact the MS
Society’s Branch Health
and Safety Officer, Andy
Grant on:
[email protected] or phone 07827 281
097.
A BIG THANKS TO YONEX
Yonex, a big-name supplier of badminton,
tennis and golf
equipment, has
received formal
thanks from
Asian MS for its
continued
support. The
company has provided various items for
auctioning, including signed memorabilia. Asian MS committee
member Ila Gangotra presented Paul
Jepson (Managing Director, Yonex UK),
Conrad Spry
and Jon
Cooper with a
small thank-
you gift during
the Yonex All
England
Badminton
Championships 2012 at the National
Indoor Arena in Birmingham. Asian MS
relies on the continued support and
generosity of companies such as Yonex,
in order to help raise much-needed
funds.
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Page 9 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
MS-friendly holiday breaks
THE CALVERT TRUSTFollowing the success of the Calvert Trust’staster activity weekends for people affected byMS in autumn 2011, the team in Kielder,Northumberland, are organising more eventsfor 2012. Between 27th and 30th April, there willbe an MS Adventure weekend being held, at acost of £309 (without care assistance) or £440(with care assistance). These prices includemeals, activities and fully accessibleaccommodation.
For more information and to make a booking,please contact Calvert Trust on 01434 250232
or email enquiries@calvert-
kielder.com. You can also visit their website
at www.calvert-trust.org.uk.
The MS Society’s Short Breaks and Activities(SBA) fund considers grants for people withMS and carers and may be able to contributetowards the cost of your break. Contact theGrants team on 020 8438 0700 or email
[email protected] for details.
MORE ACCOMMODATION
MS Society Northern Ireland hastwo fully accessible chaletsavailable for hire at the SHAREvillage in Lisnaskea. The cost is
£150 per week and includes a SHARE fitnessleisure pass. Bookings are taken on a firstcome, first served basis. To book a holidayplease contact Mark on 028 9080 2802 or [email protected].
Amberwood Holiday LodgeWest Herts Branch has a holiday lodge atShorefield Holiday Village, near Lymington,Hampshire, for people with MS, families andcarers. The chalet has a master bedroom withen-suite shower room, a twin bedroom,bathroom, and lounge/ kitchen area withdouble fold-out sofa bed. A brand new mobilityscooter is also available to use. Bookings canbe made by calling Richard Smith on
07709235729. (Please leave a message if necessary and someone will call you back)
RECENT EVENTS
MS Research Day (January 2012)
The 3rd MS Research Day held by the
Neuroimmunology
Group at The
Royal London
Hospital, in
collaboration with
Shift.ms, was a
great success. A
number of Asian
MS members attended the day and found it
extremely interesting and useful.
The event consisted of formal presentations on
various research topics, lifestyle discussions and
“Digesting Science,” which was a chance for people
to meet and chat to researchers and MS health
professionals. The research topics this year included
Progressive MS
Trials, VitaminD, New
Therapies,
Walking with
Fampyra
(Fampridine),
Inflammation in MS and The Charcot Project.
Meanwhile, lifestyle discussions included
Physiotherapy & Exercise, Current Clinical Trials,Bad Science – Should We Believe What We Read?,
Immune Tolerance, The Neurological Exam and End
Of Life Issues.
Videos of the formal presentations are available
online via the Shift.ms channel on YouTube:
http://www.youtube.com/shiftdotms
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Page 10 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
General Information
MS Essent ials 19: Muscle spasm s and
st i f fness (Third Edit io n Octo ber 2011)
A new edition of MS Essentials 19 onmuscle stiffness and spasms is nowavailable, containing information on Sativexand how it is prescribed.
Muscle stiffness and spasms are commonMS symptoms, both often described by theterm 'spasticity'. Mild stiffness in the musclescan aid balance and mobility for some, but
more severe stiffness or spasms can betiring, frustrating and, for some, painful. Thisbooklet provides guidance on ways tomanage these difficult symptoms.
If you would like more copies of this title,visit the MS Society’s online shop at
http://shop.mssociety.org.uk or contact the MS Society Information Team on
[email protected] or 020 84380799 (weekdays 9am-4pm).
**************************************
If you would like a copy of the MSSociety’s latest MS booklet, which
has been translated into 12
languages including Urdu, Hindi,Punjabi, Bengali, Gujerati and
Farsi, please contact Saher Usmanion 0208 438 0856 or
***************************************
MS Essentials 04: Tremo r (Fifth
edit io n, December 2011)
A new edition of the booklet about ways of dealing with this difficult-to-manage symptomis now available.
For some people, the tremor is so mild that they’re the only person aware of it. For others,it’s more obvious. For example, it might bedifficult to carry a drink without spilling it, or tohold a pen steady to write.
The booklet looks at physical and
occupational therapy, drug treatments,surgery and things that can help day-to-day.
This is the first of the Essentials series not tocontain a list of references. A list of referencesis available on request, and all cited articlesare available to borrow from the MS Society library (there may be a small charge). Contact the MS Society Information Team.
If you would like copies of any of the titles inthe Essentials series, visit:http: / /shop.mssociety.org.uk or phone 0300 1000 801.
Funding opportunity for people with MS National charity the MS Research and Relief Fund offers grant funding for items includingequipment, aids, adaptations, holidays andrespite care.
The fund can be used either to complementgrants awarded by the MS Society where ashortfall in funding exists, or as a singlefunding opportunity. The registered charity willconsider applications for grants for individualsand for groups.For more information contact the charity’sGrants manager Dave Farham on 01670505829 or [email protected] or visitwww.msresearchandrelief.org; or contact
Julie Gilson, MS Society Grants Manager at020 8438 0950 or [email protected]
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Page 11 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 NEWS
Parasitic worms offer hope of cure for multiple sclerosis
http://www.dailymail.co.uk/health/article-2108228/Parasitic-
worms-offer-hope-cure-multiple-sclerosis.html?ITO=1490
Researchers link MS to different area of brain
http://www.utphysicians.com/11739/researchers-link-ms-
area-
brain/?utm_source=rss&utm_medium=rss&utm_campaign
=researchers-link-ms-area-brain
Autoinjector Pen for MS Drug OK'd
http://www.medpagetoday.com/Neurology/MultipleSclerosi
s/31397
EMA accepts Genzyme's oral teriflunomide MAA for
multiple sclerosis treatment
http://pharmabiz.com/NewsDetails.aspx?aid=67711&sid
Radiology: fMRI reveals increased activity after rehab for
MS patients
http://www.healthimaging.com/index.php?option=com_arti
cles&view=article&id=32230:radiology-fmri-reveals-
increased-activity-after-rehab-for-ms-patients
NHS warned of 'neurology timebomb'
http://www.guardian.co.uk/society/2012/jan/17/nhs-
neurological-alliance-warns-timebomb?newsfeed=true
Multiple Sclerosis treatment a
challenge in India?
http://ibnlive.in.com/news/multiple-sclerosis-treatment-a-challenge-in-
india/232154-17.html
Vitamin D could be weapon against
MS
http://www.skynews.com.au/health/a
rticle.aspx?id=721026&vId=
Concert Pharma joins forces on new
MS drug
http://news.bostonherald.com/jobfin
d/news/healthcare/view/20220305co
ncert_pharma_joins_forces_on_new
_ms_drug/srvc=home&position=also
FUNDRAISING FOR ASIAN MS
If you are interested in fundraising for Asian MS, please contact our fundraising
officer, Mukesh Jethwa on [email protected]
We rely on donations to keep going so if you know of someone wanting to raise money for
charity, why not suggest that they fundraise for Asian MS? Please see the following page for
details on how to make a donation and what the money is needed for.
Deadline for the Summer
Edition of the newsletter is
14 th
May 2012. Please send
your stories, links, photos
and news to
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Page 12 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 MS
Where 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 researchprojects, 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.A first stage of the research programme saw
the identification of a drug that couldpotentially repair myelin, which is damaged in
people with MS. The project is now moving
into a second stage where researchers willundertake pre-clinical research, with the aimof ultimately translating lab findings into a
clinical trial.
Asian MS are proud to announce that they now have the facilities to allow people to make donationsto them in an easier and quicker way.
Donations by credit card via the internet site justgiving.com:www.justgiving.com/AsianMS
How to make donations by text message :
Send a text message to 70070 Remember to include the subject of the text: as AMSS89
and send it with the amount you wish to donate up to a maximum of £10
If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on.
You may donate with any number from £1-5, and the money will go directly to the MS Society, 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
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Page 13 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
Useful Information
General and Membership Enquiries: [email protected]
Website: http://www.mssociety.org.uk/ms-support/support-groups/asian-ms
Facebook: http://www.facebook.com/AsiansWithMS
Twitter: http://twitter.com/AsianswithMS
Saher Usmani, MS Society Support Groups Officer (please contact for hard
copies of this newsletter and MS information booklets in different languages):
0208 438 0856 or [email protected]
Asian MS is a national support group for Asians 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
Anisha Gangotra - Social Secretary
Mukesh Jethwa - Fundraising Officer
Abul Kamali - Website Officer
Rani Kaur - Publicity Officer/Support Officer
Shiv Sharma - Treasurer
MS Society Website: http://www.mssociety.org.uk
MS Society Helpl ine: 0808 800 8000
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 MS’ers):
http://www.shift.ms/index.php
MS Research Blog (run by Barts & The London Neuroimmunology Group):
http://multiple-sclerosis-research.blogspot.com