Two of Quadri's works were Born in Hyderabad, India, Quadri was inspired at an early age to become an artist, by his mother who painted on display at the MS frequently. She also instilled in him, a great love of nature. His father was a surgeon and this most probably National Centre, from the collection "Geometry without accounts for Quadri's great observational skills and Gravity," prompting great scrutiny from young attention to detail. His young mind was stimulated.... and old. Quadri expounded his theories, talking about his desire to inspire others to look at art Quadri came to England in 1966 with his parents. He from a different perspective and gave the viewer studied at the Birmingham College of Art, which he describes as 'a baptism of fire' in self discovery. Next, he the freedom to choose. Look at his work from above, if you so desire! There should be no went to the Royal boundaries. One attendee commented, "the talk College of Art in was simply enthralling- a new perspective for London, where he looking at art. The beholder has a sense of cemented his vocation as an artist. freedom to choose how they view a picture!" Dante's Inferno was a profound influence on Quadri's work and culminated in a visual journey of expression. Quadri also loves to travel and this is apparent in his wide-ranging works which have toured the UK and India. Some of his works remain part of collections at the Tate, Manchester City Art Gallery and Birmingham Central Library, to name You can learn more about Saleem Quadri at but a handful of locations in the UK alone. www.saleem-arif-quadri.co.uk
"Geometry Without Gravity"
Three lucky attendees purchased signed photographs by the artist, with the funds raised going to Asian MS. Quadri and his wife are also happy to offer tours of his studio for small groups of Asian MS members by appointment. So be inspired!
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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
ABOUT SALEEM
Saleem was diagnosed with primary progressive MS in 2006, although his first symptoms appeared ten years previously. He has gradually lost the use of his legs, and MS has curtailed his activities to some extent. However, he has good and inspirational support around him, in the shape of his wife Dr. Zenobia Shah. His art/work is his true passion and vocation, something which he has been able to continue with the zeal and enthusiasm he has always had. He has accepted that MS is part of his life and it has brought out something extraordinary in him his work has become smaller (working on paper), particularly the visual concepts 'Geometry without Gravity' and 'Books without Boundaries' (book cover design that he conceived and is registered with the 'Intellectual Property Office' in the UK, as a original design), as he has had to adapt to his symptoms. He now works from both home and his studio, with additional assistance when required. He also still regularly attends exhibition, museums, lectures, meetings, and seminars etc. and continues to travel both within the UK and abroad to pursue his photography, research, and curatorial projects.
FUNDRAISING FOR ASIAN MS If you are interested in fundraising for Asian MS, please contact our fundraising officer, Mukesh Jethwa on asianms@mssociety.org.uk 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? There are further details in this newsletter about how to make a donation and what the money is needed for.
Deadline for the next edition of the newsletter is 1st September 2013. Please send your stories, links, photos and news to asianms@mssociety.org.uk
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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
Finally, for those of you who are wondering about the photo I had the chance to walk the red carpet in April when I attended the Olivier Awards at the Royal Opera House. It was one of the best experiences Ive ever had and was definitely the most glittering and star-studded Saleem Quadri is the feature for our front page this issue. He is event Ive been to. I could get used to that kind a fantastic example of how having MS has not stopped him from of glamour! pursuing his passion for art. We were lucky enough to have him share some of his work with us at our Annual Meeting in May ~Trishna x and he was well-received by all who attended. PS. As always, please do pass this The Annual Meeting also saw the voting in of the new newsletter on to anyone who may be committee. You will have the chance to get up close and interested personal with some of us on p.8-9.
CONTENTS
-Geometry without Gravity.p.1-2 -A message from the Editor.p.3 -Sabrina runs for the MS Society.p.4 - News.p.5-6 -Dates for your Diary, MS Week..p.7 -Meet the Committee; Annual Meeting.p.8-10 -Asian MS research donation.p.10 -Asian MS Needs You!.p.11 -Get involved in research projects.p.12-16 -Recipe From Lubna; Become a Regional Contact for Asian MS. p.17 -General Information.p.18 -Latest Research & MS In The News.p.19 -Fundraising For Asian MS.p.20 -Useful Information.p.21
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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
This year, I chose to raise money for the MS Society. I have raised money for other charities in the past but this time was significant, as it is a disease that my family and even friends have been personally affected by. I have seen first-hand the valuable work and services that the MS Society I would like to say a massive thanks to everyone that offers. Moreover, there is the all important research has sponsored me and encouraged me. Also to the that the society funds, which is a vital part of MS Stars team and the volunteers on race day who battling this disease. cheered us on along the way, which really helped. My sponsorship page will remain open until the end of August so if you would like to sponsor me please feel free to do so on: https://www.justgiving.com/Sab-Naz1 ~ABOUT SABRINA: Sabrina first learned about Asian MS when she visited MS Life in Manchester in 2012. She visited our stand and also attended the Support Groups workshop where Asian MS was speaking. She has now been a member for over a year.
In March I set about raising money; I set up a justgiving sponsorship page and initially asked close friends and family to sponsor me before I widened the net. I have been overwhelmed by the support and, to date, I have raised 713.93.
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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
Michelle joins from Age UK, where she is the Charity Director General.
Thanks to his frontpage feature in the previous issue of this newsletter (Issue 1 2013), Dr. Ram has helped to make that issue available to an even wider audience. It was published to the research blog that is run by the MS team at Barts and The London Group. So weve gone global! You can view the post here: http://multiple-sclerosisresearch.blogspot.co.uk/2013/04/asian -ms-news.html
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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
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 Week wrap up
MS Week took place between 29th April and 5th May, with the strapline stop the MS lottery, which focused on the release of the Societys report A Lottery of Treatment and Care MS Services Across the UK. Media coverage Excellent media coverage in MS Week included BBC Breakfast, ITV News, BBC News Online, Guardian, Daily Telegraph, Independent, Huffington Post, as well as mentions on BBC Radio 5 and BBC Radio 2. Dozens of regional newspapers ran lengthy articles, and almost half of all BBC local radio stations in the UK interviewed one of the Societys spokespeople.
Online campaign The online campaign at www.mssociety.org.uk/mslottery got off to a flying start with a high amount of engagement from the community. Almost 7,000 people have added their name to the campaign so far.
Almost 1,400 people tweeted or retweeted about the campaign including celebrities Chris Hoy, Scott Mills, Sally Gunnell, the Macabees, Alex Deakin, Russell Tovey and Beccy Huxtable.
Parliamentary receptions Parliamentary receptions in all four nations were also a great success, with several ministers in attendance as well as numerous politicians and a few high profile supporters.
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
SANJAY is currently a Support Officer for Asian MS and is a co-founder of the support group. He has had MS for over 28 years, many of those being undiagnosed. He was a Trustee of the MS Society from 2002 until 2007 and cofounded Asian MS during the mid-1990s. at Xerox (UK) from 1991 to 2000 and he has been a Justice of the Peace (JP) since 2004. He is a life-long season ticket holder at West Ham United Football Club and that really is a Labour of Love! TRISHNA is the Asian MS Newsletter Editor. She was diagnosed with MS in 2008, although onset was probably three years previously. She has been involved with Asian MS for around four years, two of which she has been responsible for developing and producing the support groups quarterly newsletter. business press from Spanish into English. She is the committees Sporty Spice, playing competitive league hockey on a weekly basis, and is also a self-confessed Zumba addict. Earlier this year she even tried out snowboarding for the first time! She is a great advocate of living life to the full and fills whatever spare time she has by experiencing as many different things as she can.
Vinnie has two sisters (who are twins) who both have MS and He has worked in a variety of executive and managerial roles
10+ years. Hes married with three She works full time as a translator, translating Latin American
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
ILA is an Asian MS committee member who has been involved in the support group for around three years. She has twin daughters who both have MS (one of whom is Trishna, the Asian MS Newsletter Editor) and also has a nephew with the condition. She has a particular interest in research and the science behind MS, including new developments in the drugs pipeline. She runs a sports retail business with her husband Ramesh, and is particularly keen on encouraging everyone to lead an active life, regardless of age and/or disability. She herself regularly attends Zumba classes and is a vocal supporter of her husband and three daughters when they play hockey! MUKESH has been an Asian MS Committee Member and Fundraiser since 2010. He is currently the Fundraising Officer. He is also an active member of the Lions, Freemasons and Vanza Society of London, servicing local charities and community events. His wife Daksha was diagnosed with MS in 1998, and her current condition is progressive MS. He has actively promoted MS awareness and has organised several events in the last ten years, including a charity walk in 2009, which attracted over 600 people in Fryent Park, Kingsbury, London and raised 42,000. Other interests include photography, music (listening and organising karaoke events) and travelling to meet family and friends. Although he is not as active these days, he was a regular badminton and squash player. He enjoys country walks and spends time in the gym at the weekends. He is still in full time employment and enjoys a hectic but adventurous lifestyle, whilst managing family affairs and matters.
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Many staff contacts from the MS Society also attended. David Lusk (Strategic Lead for Diversity), Sue Ellison and Petula Storey (Head of Volunteering) were on hand to answer members queries. Stuart Long (Head of Working Locally) gave a short presentation on 'working locally,' which led to an interesting question and answer session. Our two trustees, John Litchfield and John Miller, were also on hand to show their support.
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
(....continued from p.9) We kicked off with a Report on the year's activities. Our Asian MS newsletter has now gone global and is beamed around the world. Well done to our Editor and contributors! We have collaborated with the MS Society on many projects, including the Relapse Support Project. One of our members, Priyal Raja has made a documentary on how keeping a positive attitude can make a difference with a serious medical condition. It features our very own Sanjay Chadha and Shiv Sharma and is very moving. We have also connected with celebrities such as DJ Rav Patti of Panjabi Hit Squad fame!
Shiv Sharma gave a review of our finances, which are in good shape. Saher Usmani (Support Group Officer), without whom Asian MS could not function, handled the election of the new committee. Thank you to everyone who participated in and helped with this event. A special thanks to our guest speaker Saleem Quadri, and also to Mukesh Jethwa who organised a terrific tea. It was wonderful for all the attendees to socialise with one another and share stories and information, particularly as so many had travelled from so far!
One of the ways Asian MS supports people with MS is to make financial contributions to research projects. This year, Asian MS has earmarked a donation of 1,000 for the Amiloride and Phenytoin trials. These trials are supported by the MS Society and very much rely on funding from charitable organisations and individual donations. For more information on both studies please visit the following links: https://mssociety.netdonor.net/eacampaign/action.retrievestaticpage.do?ea_s tatic_page_id=2217 (Phenytoin) https://mssociety.netdonor.net/eacampaign/action.retrievestaticpage.do?ea_s tatic_page_id=2216 (Amiloride)
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
If you are thinking about going on holiday but have accessibility needs, there is a wealth of information and support available online to help you plan your trip. A good source of information is: http://www.disabledholidayinfo.org.uk/index.htm Even if you dont have accessibility needs, travelling when you have MS does often need 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 of forward planning will help to make your holiday hassle-free!
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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
KEEP YOUR EYE OUT! The MS Society maintains a list of research studies and clinical trials that are currently recruiting participants. If you are interested please go to: http://www.mssociety.org.u k/ms-research/get-involvedin-research
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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
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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
Personal Experiences of People with MS An This study, being run by the University of Explorative Study Manchester, aims to develop and test a device This study, being run by the that facilitates walking in people with drop-foot. University of Oxford, aims to The new device will provide muscular look at the experiences of stimulation on the fore of the leg to hold up the people with MS, foot and stop it from dragging. It utilises small identifying changing needs and how sensors that are put onto the lower leg and clinicians can foot in order to capture leg motion and help provide support at establish the correct time for muscle different stages of MS. Study findings will stimulation. hopefully help to improve health services for people with MS and will be shared amongst Participants will need to attend three sessions researchers, clinicians, people affected by MS, at the University of Manchester, with each one policy-makers and academics. lasting for around 2 hours. Participants will Participants would be asked for a face-to-face need to walk while movements are recorded. interview about their experiences of MS, There will be reimbursement for reasonable including what their thoughts and feelings have travel expenses and compensation for been at different stages, how you have made participants time. decisions and how you have obtained information. The interviews will probably last for around an hour and will be audio recorded. In order to participate, you must have dropfoot in one foot and no other walking problems. You need to be able to walk without the use of assistive devices like a stimulator, orthosis, splint or brace. The study runs from May to October 2013.
To take part, you need to be living in the UK, have MS and be over 18. Recruitment for participants is happening now and the interview can be arranged for a time and date that is convenient to you. The exact date for recruitment is unknown, however, it is predicted to be around For more information please contact Iris June 2013. The interview will be arranged to take Garcia Rios at: iris.garciaplace in a venue convenient to you. rios@postgrad.manchester.ac.uk For more information please contact Abi Eccles at abi.eccles@phc.ox.ac.uk or on 07587-142597.
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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
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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
Looking at therapist effect in Shiatsu treatments with people with MS This study, being run by Teeside University, seeks to investigate whether Shiatsu therapy is influenced by the therapist offering the treatment. Shiatsu therapy is a complementary treatment given to MS patients. Currently it is unclear to what extent the therapists ability to form a relationship with patients and also the therapists personality influences the outcome of the treatment. Therefore, it is hard to determine exactly what help this therapy offers to people with MS. It is the first time that therapist effect will be researched for Shiatsu therapy. Participants will be required to fill out a short screening questionnaire; monitor their symptoms for two periods of six weeks via a tick-box diary (during six weeks of treatment and for six weeks posttreatment); and be interviewed when the study commences and when the six weeks of treatment ends. Half of participants will have their first, third and sixth treatments recorded on video. All participants will be requested to pay half the normal cost of treatment. To participate you must be over 18 years old, have a confirmed diagnosis of secondary progressive or primary progressive MS, have ongoing MS symptoms, and do not have any symptom or condition that would make Shiatsu treatment unsuitable. The study runs between May 2013 and December 2015. Three therapists are participating in the study so participants need to be living close to a practitioner. The following geographic areas are suitable: Hebden Bridge, Todmorden, Silverstone and Nottingham. Each therapist will recruit up to eight participants (24 participants in total for the study). For more information please contact Lisa Esmonde on 0114-2558281 or at l.esmonde@tees.ac.uk
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
*You can buy a 7oz/200g block of tamarind from an Asian grocery store. Break off 2oz/60g and put in a measuring jug, add 4 floz/120ml of water and cook in the microwave on full power (650 watt) for 2 minutes (reduce timing accordingly for 750 watt or 850 watt). Allow to cool, stir with a fork to loosen the pods and then strain through a sieve into a bowl, using your fingers to push through the extract to leave a thick pulp for use.
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.
Would you be interested in becoming a regional contact for Asian MS? Wed love to hear from you as we want to build a network of support for Asian MSers around the country. Please contact us at asianms@mssociety.org.uk for further information.
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
Financial assistance There are two MS Society 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 or grants@mssociety.org.uk or visit the grants pages on the website. If you live in Scotland, please call 0131 335 4050 or email grantsscotland@mssociety.org.uk
Revised MS factsheets
The MS Society has recently revised a number of its MS factsheets which you can download from the MS Society website or the online shop: Genes and MS (February 2013) Hot and Cold the effects of temperature on MS (February 2013) Education for children affected by MS (March 2013) Education for children affected by MS in Scotland (February 2013) Posture and movement 1 an introduction (February 2013)
Emotional support Posture and movement 2 moving well with The MS Helpline is available to give MS (February 2013) free and confidential advice MS in the family: The mans guide to caring and support to anyone for someone with MS (February 2013) affected by MS from 9am9pm, Monday-Friday. The Balance and MS (April 2013) helpline number is freephone For a list of all the MS Societys key 0808 800 8000. Please specify if you would like publications showing the latest editions to speak with someone from Asian MS and you and revisions visit the website: will be directed to one of our support officers. www.mssociety.org.uk/msresources/key-publications or call 0300 *********************************** 1000 801. If you would like a copy of the MS Societys latest MS booklet, which has been translated To contact the MS Society Information into 12 languages including Bengali, Farsi, Team: Email infoteam@mssociety.org.uk Gujarati, Hindi, Punjabi & Urdu, please or call 020 8438 0799 (weekdays 9amcontact Saher Usmani on 0208 438 0856 or 4pm) susmani@mssociety.org.uk
They are also available on USB stick for a small fee.
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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
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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
Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way.
You can also raise funds every time you shop through EasyFundraising:
http://www.easyfundraising.org.uk/causes/asianms
Useful Information
General and Membership Enquiries: asianms@mssociety.org.uk 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 susmani@mssociety.org.uk
Asian MS is a national support group for Asians with MS, their carers, friends and family. We seek to increase awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. We produce online and printed information in various languages and offer an interpreting service. Vinnie Kochhar Chair Shiv - Treasurer Trishna Newsletter Editor Mukesh - Fundraising Officer Rani - Publicity Officer/Support Officer
MS Society Website: http://www.mssociety.org.uk MS Society Helpline: 0808 800 8000 Asian MS JustGiving: www.justgiving.com/AsianMS MS Register: www.ukmsregister.org MS Trust (charity that provides information 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
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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