Asian MS Newsletter 2013 Issue 2
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Asian MS Newsletter 2013 Issue 2 Asian MS Newsletter 2013 Issue 2 Document Transcript

  • Page 1 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070 Issue 2 - 2013 Asian MS – Newsletter “Geometry Without Gravity” Longstanding Asian MS member, Saleem Arif Quadri MBE MA (RCA) delighted an audience of his fellow Asian MS members and guests on Saturday 25th May 2013 at the MS National Centre in Cricklewood, with his talk entitled "Geometry without Gravity." He attended with his wife Dr. Zenobia Shah, Barrister. Born in Hyderabad, India, Quadri was inspired at an early age to become an artist, by his mother who painted frequently. She also instilled in him, a great love of nature. His father was a surgeon and this most probably accounts for Quadri's great observational skills and attention to detail. His young mind was stimulated.... Quadri came to England in 1966 with his parents. He studied at the Birmingham College of Art, which he describes as 'a baptism of fire' in self discovery. Next, he went to the Royal College of Art in London, where he cemented his vocation as an artist. 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 but a handful of locations in the UK alone. He has won several prizes and awards as a Sculptor and an Artist, culminating in an MBE for Services to the Arts, which he received in the Queen's Birthday Honours List in 2008. Two of Quadri's works were on display at the MS National Centre, from the collection "Geometry without Gravity," prompting great scrutiny from young and old. Quadri expounded his theories, talking about his desire to inspire others to look at art from a different perspective and gave the viewer the freedom to choose. Look at his work from above, if you so desire! There should be no boundaries. One attendee commented, "the talk was simply enthralling- a new perspective for looking at art. The beholder has a sense of freedom to choose how they view a picture!" 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! You can learn more about Saleem Quadri at www.saleem-arif-quadri.co.uk "Geometry Without Gravity"
  • 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 Do YOU have a personal story to tell? If you would like others to hear about your personal journey with MS then please do get in touch with us here at Asian MS. Email asianms@mssociety.org.uk 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 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.
  • 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…… The Great British Summer has arrived and true to form has looked more like a mixture of all the seasons rolled into one. Having religiously topped up my Vitamin D levels (and my tan of course!) in the sunny days we’ve been having in England, I was also lucky enough to get away to Barcelona, so I hope I’m fully Vitamin D replete now! I hope that many of you are lucky enough to get away for some sunshine too, and we at Asian MS would be really interested to hear about your experiences about travelling abroad when a member of the party has MS. I’m hoping that the next issue will carry a bit of an international theme, so please see p.11 for more information about how you can help. Saleem Quadri is the feature for our front page this issue. He is a fantastic example of how having MS has not stopped him from 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 and he was well-received by all who attended. The Annual Meeting also saw the voting in of the new committee. You will have the chance to get up close and personal with some of us on p.8-9. There is also the usual news, happenings and information about research studies. I’d like to take this chance to emphasise that this newsletter is for you, our members and readers. Please do share with us your news and stories. If there’s one thing I’ve learnt since I was diagnosed it’s that sharing experiences can be invaluable. You’ll find ways of how to get in touch throughout the newsletter. 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 I’ve ever had and was definitely the most glittering and star-studded event I’ve been to. I could get used to that kind of glamour! ~Trishna x PS. As always, please do pass this newsletter on to anyone who may be interested 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
  • 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 POUNDING THE ROADS FOR THE MS SOCIETY ~by Sabrina Naz A few years ago, I decided that I needed to stay fit and healthy and took up running. To keep myself motivated, I signed up for 10 km races or 5 km races. So on 26th May 2013, I stood at the start line of the Great Manchester race. It is a 10 km run around central Manchester and was not the first time that I was participating in this race. 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 offers. Moreover, there is the all important research that the society funds, which is a vital part of battling this disease. 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. I trained hard and regularly, in the hope that I would have a good race. However, the week before the race I picked up a common cold! I was determined not to let this stop me and I still got round the course to the finish line, to do my sponsors proud. It was an amazing day with an amazing atmosphere. I would like to say a massive thanks to everyone that has sponsored me and encouraged me. Also to the MS Stars team and the volunteers on race day who 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.
  • 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 NEWS AND HAPPENINGS Developing the MS Society website for health and social care professionals People with MS say they want the health and social care professionals they engage with to be better informed about MS. Therefore, the MS Society is currently developing a section of the Society website specifically for professionals. This new section for professionals will offer access to free online learning courses including an e-learning module on MS for GPs. It will direct professionals to upcoming courses and training events relevant to them, as well as provide access to study grants to support their attendance at training courses. The MS Society will be promoting a wealth of useful resources and free publications, as well as provide funding to set up local information points. There will also be opportunities for professionals to learn from each other through our online forums and blogs. This new section of the Society’s website will launch later this year. MS Society appoints new CEO The MS Society has announced that Michelle Mitchell has been appointed as the Society’s new Chief Executive from September. Michelle joins from Age UK, where she is the Charity Director General. Thanks to his front- page 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 Bart’s and The London Group. So we’ve gone global! You can view the post here: http://multiple-sclerosis- research.blogspot.co.uk/2013/04/asian -ms-news.html
  • 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 NEWS AND HAPPENINGS MS Register launches newsletter The MS Register has launched a newsletter for its participants. Those running the Register believe it is important to share information with those taking part, to show how they are contributing towards its success. Included in the first issue is information about the Register’s progress since it was started, the newly published research, the work completed after the collection of data and the events that the MS Register will be attending in 2013. They are keen for feedback so if you are part of the Register and want to share your experiences, then they are interested in hearing from you so that you can be included in the next newsletter. There will also be a Twitter and Facebook campaign. You can access the newsletter by clicking on the link below: http://www.ukmsregister.org/Newsletter/Re ad/4885/1 ASIAN MS In the Media Asian MS is getting the word out there, with the help of Shift.ms, an online social network for people with MS, particularly those who are on the “younger” end of the spectrum or who have a young outlook on life. Asian MS featured in the Shift.ms online magazine’s series about the MS Society’s support groups. You can read more here: http://shift.ms/2013/02/support- groups-asian-ms/ PSSST... HEARD ONLINE... Topics being discussed on the Asian MS Facebook Group include: Experiences with Gilenya, MS Matters article with Rav from Punjabi Hit Squad, What type of MS do you have?, Opinions on whether living in the UK makes a difference to someone having MS, holidaying with MS, and a plea for information about Genetics and MS. You can join the discussion at: https://www.facebook.com/groups/2 416402103/ A documentary has been made in conjunction with the Multiple Sclerosis Society of India, to raise awareness of the condition. The film features well-known Bollywood actress Vidya Balan, as well as Mahesh Bhatt and Milind Soman. The documentary has been made by Amit Kr. Jha and Yash Kapoor. Early on in her career, Vidya played a patient with MS in the film “Guru.”
  • 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 DATES FOR YOUR DIARY MS Society’s 60th Anniversary! In 2013, the MS Society turns 60 years old. It was founded by Mary and Richard Cave to support and empower people affected by MS. The MS Society will be celebrating the achievements of everyone involved in the organisation and will be looking forward to an exciting future. Rather than take resources away from vital research and support, celebrations will be integrated into existing events. MS Week, annual meetings, national fundraising events and the MS Awards will all have extra “60th sparkle”. If you have any ideas about how to make fundraising events that extra bit special then please email them to: 60years@mssociety.org.uk There will be lots of ways to get involved and to raise funds to help support the MS Society. You can also use the opportunity to help raise awareness of MS within the Asian community and fund raise for Asian MS! If you need help to set up any events, then please contact Mukesh Jethwa, the Fundraising Officer for Asian MS, at asianms@mssociety.org.uk 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 Society’s 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 Society’s 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. Please keep your eyes peeled for information about an upcoming social that we will be planning in London. Many of you have been asking when our next event will be and we’d like to reassure you that it is being planned imminently!
  • 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 MEET YOUR NEW COMMITTEE! Although many of you may be familiar with the faces of your Asian MS committee, you may not necessarily know much about each of our personal stories. So in this issue, some of us will be introducing ourselves and enabling you to get up close and personal with your committee! VINNIE is the Chair of Asian MS. She has been in the role since 2009 and before that was an Asian MS Committee Member and Fundraiser. She organized the 2004 Fundraising Dinner Dance, the Golden Ball. She also worked on the MS Society Helpline between 2002 and 2005. Vinnie has two sisters (who are twins) who both have MS and who live in Manchester. Her background is in law. Other interests include additional charitable work, especially at the Chinmaya Mission in the UK. She also supports overseas projects for rural development in India. She practices yoga and plays tennis, and also enjoys spending time with her extended family. SHIV is the Treasurer of Asian MS. He’s been a committee member for the past 8+ years, five of which he has been Treasurer. He is a fully-qualified accountant and has had RRMS for the past 10+ years. He’s married with three children and loves everything Indian – food, women, music, Bollywood and cricket, although not necessarily in that order! He frequently travels to India and meets up with MSSI (MS Society India) whenever he does. He is also involved with other Indian charities, especially those linked with children, the poor and the Sambhavna Trust (which provides help to people in Bhopal following the Union Carbide gas incident). 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 co- founded Asian MS during the mid-1990s. He has worked in a variety of executive and managerial roles 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 group’s quarterly newsletter. She works full time as a translator, translating Latin American business press from Spanish into English. She is the committee’s “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.
  • 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 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. ANNUAL MEETING REVIEW by Vinnie Kochhar It’s official! We’re a National Support Group! At this year's Annual Meeting, our members attended from all over the country, including Burnley, Wakefield, Birmingham and Ipswich. It was fantastic to welcome old and new faces to the MS National Centre. It was a family affair and young and some not so young, packed into the Rose Room. 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.
  • 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 (....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! Justin Rose (son of Vicky Rose our Minutes Secretary) gave a review of a fundraising. A tennis tournament organised by Vicky and myself was highlighted and raised £3,700 for the MS Society! £1,000 has already been earmarked for the Amiloride and Phenytoin Trials. ************************************************************ If you have any questions about how Asian MS is structured or run then please do not hesitate to contact us. If you have any ideas about future projects, you need support or you have heard about an event where Asian MS’s presence could be useful then do let us know! ************************************************************ 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! ASIAN MS MAKES DONATION TO RESEARCH PROJECTS 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/ea- campaign/action.retrievestaticpage.do?ea_s tatic_page_id=2217 (Phenytoin) https://mssociety.netdonor.net/ea- campaign/action.retrievestaticpage.do?ea_s tatic_page_id=2216 (Amiloride)
  • 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 Contributions needed for the next issue! With summer upon us, it’s the time when many of us think about getting away and having break. While having MS doesn’t mean you have to disregard those far-flung places you may have always wanted to travel to, it does often mean you need to do more planning than the average person. Whether it’s accessibility needs, access to support/care services or something as simple as storing your medication, Asian MS is interested to hear about your experiences and tips for travelling abroad and within the UK. For example, have you found a particular country to be especially suitable for MS’ers? What advice would you give for MS’ers thinking of travelling long haul? Have the adrenaline junkies among you still managed to go on adventure holidays post-diagnosis? If you have something that you would like to share then please email asianms@mssociety.org.uk by 1st September 2013. 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 don’t 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! ASIAN MS STILL NEEDS YOUR HELP! As we expand, Asian MS is in desperate need of more volunteers to help us to continue offering our support and services. Communication with our membership is of utmost importance to us and we are still looking to appoint a Membership Secretary and a Website Editor. The Membership Secretary would be mainly responsible for dealing with correspondence and membership issues (such as maintaining the membership database). The Website Editor would be in charge of updating the Asian MS website, particularly uploading e-editions of the Newsletter and Asian MS news. Please contact asianms@mssociety.org.uk if you are interested in either post and would like further information. Emails should be addressed to Vinnie Kochhar.
  • 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 A CHANCE TO GET INVOLVED Experiences & perceptions of healthcare services from people with MS and their clinicians This study, being run by the University of Manchester, aims to collate the experiences of MS’ers of health care services and look into what they believe has been helpful or needs improving. The findings will be presented to health care services, in an attempt to make the experiences for people with MS better and potentially improve patient care. Participants will be required to chat to a researcher about their experiences of health care services for MS, as well as their health care needs in terms of psychological/emotional and physical symptoms. This will last for around an hour and can occur at your house, work or at the University of Manchester. Please note that organisers of the study are unable to reimburse travel expenses. A small group of participants will be invited to attend a follow-up interview six and twelve months after the original interview. Participants can attend the original interview without having to participate in the additional interviews. Participants must be over 18 years old and have a confirmed diagnosis of MS. They should also be living in the Greater Manchester region. It is running between September 2012 and September 2013. For more information contact: Abigail Methley at abigail.methley@postgrad.manchester.ac.uk or on 07950 619 368. THE MS REGISTER – Have you signed up yet? The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. You can take part by completing a series of simple online questionnaires. You will then be reminded every three months to record any changes in your condition in the lifestyle, symptoms and medication sections. If you are over the age of 18 and living in the UK, with a confirmed diagnosis of MS made by a consultant neurologist, you are eligible to take part in this study. There are also a small number of pilot sites that are collecting clinical information: Royal Victoria Hospital, Belfast; Western General Hospital, Edinburgh; St. Mary’s Hospital, London; Queen’s Medical Centre, Nottingham; and Morriston Hospital, Swansea. http://www.ukmsregister.org KEEP YOUR EYE OUT! The MS Society maintains a list of research studies and clinical trials that are currently recruiting participants. If you are interested please go to: http://www.mssociety.org.u k/ms-research/get-involved- in-research
  • 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 A CHANCE TO GET INVOLVED Using FES and robotics to improve arm movement in people with MS This study, being run by the University of Southampton, will explore if the use of FES (functional electrical stimulation) and robots together can give people with MS more control over their arm function and movement. Participants would need to attend one session to see their response to FES. If suitable, you will then be able to participate in the study. You will be shown how to wear “shimmer sensors,” which is like wearing a watch. It records arm activity. You can be helped to put them on and take them off by a carer or family/friend. The robot is like an arm support and you will be shown how it functions. The same week, you will need to carry out various assessments to determine how the FES and robotics are working. Then you will need to wear the shimmer sensors at home. There will be 18 treatment sessions over 8-9 weeks, with each session lasting around 1 hour. Following the final assessment, you will have the chance to give feedback. Travel costs to and from the University of Southampton will be reimbursed. You can participate if you have an MS diagnosis and you also have weak upper arms and are unable to lift for a period of time. The study runs between June 2013 and October 2013 and participants will need to live relatively close to the university so that they can attend sessions. For more information please contact Trish Sampson at ps1m12@soton.ac.uk or on 02380- 598255. Get involved with your local Healthwatch From April 2013 a new patient champion body, Healthwatch, will be launched in every local authority across England. Each local Healthwatch will be responsible for collecting views and experiences of health and social care services from patients, carers and all members of the public. They’ll be responsible for making sure your views are listened to. The MS Society is aware that there are lots of gaps in MS services across the country. If you have concerns about MS health and care services in your area, get involved with your local Healthwatch and make your voice heard. This is a real opportunity to put MS on the map and your chance to address local issues. If you’re already active in your local Healthwatch, the MS Society and Asian MS, would like to hear from you so we can share your story to help inspire other people. Contact Samantha Kennedy at campaigns@mssociety.org.uk or on 020 8438 0700 and/or Asian MS at asianms@mssociety.org.uk For more information on Healthwatch visit www.healthwatch.co.uk
  • Page 14 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 Personal Experiences of People with MS – An Explorative Study This study, being run by the University of Oxford, aims to look at the experiences of people with MS, identifying changing needs and how clinicians can provide support at different stages of MS. Study findings will hopefully help to improve health services for people with MS and will be shared amongst researchers, clinicians, people affected by MS, policy-makers and academics. Participants would be asked for a face-to-face interview about their experiences of MS, including what their thoughts and feelings have been at different stages, how you have made decisions and how you have obtained information. The interviews will probably last for around an hour and will be audio recorded. To take part, you need to be living in the UK, have MS and be over 18. Recruitment 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 June 2013. The interview will be arranged to take place in a venue convenient to you. For more information please contact Abi Eccles at abi.eccles@phc.ox.ac.uk or on 07587-142597. Making walking easier for people with drop-foot This study, being run by the University of Manchester, aims to develop and test a device that facilitates walking in people with drop-foot. The new device will provide muscular stimulation on the fore of the leg to hold up the foot and stop it from dragging. It utilises small sensors that are put onto the lower leg and foot in order to capture leg motion and help establish the correct time for muscle stimulation. Participants will need to attend three sessions at the University of Manchester, with each one lasting for around 2 hours. Participants will need to walk while movements are recorded. There will be reimbursement for reasonable travel expenses and compensation for participants’ time. In order to participate, you must have drop- foot 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. For more information please contact Iris Garcia Rios at: iris.garcia- rios@postgrad.manchester.ac.uk
  • Page 15 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 A Flourishing Life: Single Women Living Well with MS This study, being run by the University of East London, aims to look at the experiences of single women living with MS. A lot of previous research concentrates on MS as an illness and has neglected people who are living successful, productive and happy lives whilst living with the challenges of MS. Hopefully, the study results will form the basis for more research on psychosocial wellbeing of people with MS and lead to the development of interventions to support people with MS. Participants will be interviewed face-to-face and the information they provide will be analysed. All data will be made anonymous and will be securely stored. Interviews will last for around 40-60mins and will take place in North Kent and London. You can take part if you are a single female who is over 18 and who has had a confirmed MS diagnosis for at least two years. The study is running between February 2013 and September 2013. For more information contact Jane Stuchbury by email at jane_stuchbury@hotmail.co.uk MS Society launches a pioneering new research strategy The MS Society has launched a new research strategy, that will be effective from 2013 to the end of 2017. The strategy aims to ensure that the best, most relevant research is funded, which will bring new treatments through to people with MS as quickly as possible. The strategy will lead to a much more targeted approach to funding research. The MS Society hopes that this will ensure its research programme continues to bring life-changing benefits to people affected by MS. Priority areas will include:  Identifying and testing treatments that can slow or stop progression in people with MS (including neuroprotective and immune-based therapies)  Developing ways to predict the course of MS and preventative and risk reduction strategies for MS  Increasing our understanding of myelin repair with an emphasis on translating our current knowledge into treatments The MS Society has also established a ‘Priority Setting Partnership,’ the James Lind Alliance. This project will establish what the MS research priorities are for health professionals and people affected by MS. The Society wants to produce a list of the top 10 priorities that emerge from the exercise, in order to help shape its care and services research programme, as well as further clarify specific priorities for biomedical research. You can find out more by visiting: www.mssociety.org.uk/jla
  • Page 16 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 Childhood MS: Families’ Experiences and Support Needs This study, run by the University of Manchester, seeks to improve the understanding of needs and experiences of young people with MS and their carers and parents; identify how improvements can be made to current services; and assess whether support and services received by young people are adequate and appropriate. The study results will be utilised for the development of recommendations on how appropriate and acceptable support can be provided to young people with MS and their carers and parents. Participants will be required to attend an interview with a researcher, which can be held at a place and time that is convenient to them, or over the telephone. The interview will be for around one hour. Participants need to be under 18 years old and have been diagnosed with MS, or be a professional, parent or carer who supports a young person with MS. The study runs from January 2013 until April 2014. For more information, please contact Sue Kirk or Denise Hinton by telephone on 0161-3067872 or 0161-3067332 or by email on sue.kirk@manchester.ac.uk or denise.hinton@manchester.ac.uk 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 post- treatment); 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 END THE POSTCODE LOTTERY! The MS Society is calling for people with MS to have fair access to the treatments and services they require, when they are required, regardless of where they live. Add your voice to the campaign today! mslottery.mssociety.org.uk/join-the- campaign/?utm_source=newsandresearch&utm_me dium=carousel&utm_content=image&utm_campaign =lottery
  • Page 17 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 Recipe from Lubna Chickpea and potato curry (Channa) Ingredients 2 tins (14 oz/397g) chickpeas (channa) 1 medium onion - chopped 1 tsp crushed garlic 1 tsp crushed ginger 1 tsp coriander (dhaniya) powder 1 tsp cumin (zeera) powder ½ tsp turmeric (haldi) powder ½ tsp chilli powder ½ tsp channa masala (available in most Asian grocery shops) 2 tblsp tamarind (imli) pulp* 4 tblsp oil Salt to taste 2 medium potatoes Chopped green coriander (dhaniya) Method - Fry chopped onions in oil until golden. - Add the ginger, garlic and all the spices, except for channa masala to use later, add a little water to prevent the spices from sticking to the pan, fry for a minute. -Add the chickpeas with the brine, bring to the boil and cook for 20 minutes until water has reduced but not dry. -Meanwhile cook the potatoes until tender and cut into half and then into quarters. -Add the tamarind* (imli) pulp and channa masala to the chickpeas and check for salt and add to taste if desired, cook for a further few minutes. -Remove from heat and using a potato masher break up chickpeas slightly. -Add the potatoes and combine with the chickpeas. -Garnish with green dhaniya (coriander). This dish can also be served as a starter. *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 she’s slowed down a great deal as she’s 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 she’d 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? We’d love to hear from you as we want to build a network of support for Asian MS’ers around the country. Please contact us at asianms@mssociety.org.uk for further information.
  • Page 18 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 Emotional support The MS Helpline is available to give free and confidential advice and support to anyone affected by MS from 9am- 9pm, Monday-Friday. The helpline number is freephone 0808 800 8000. Please specify if you would like to speak with someone from Asian MS and you will be directed to one of our support officers. *********************************** If you would like a copy of the MS Society’s latest MS booklet, which has been translated into 12 languages including Bengali, Farsi, Gujarati, Hindi, Punjabi & Urdu, please contact Saher Usmani on 0208 438 0856 or susmani@mssociety.org.uk They are also available on USB stick for a small fee. *********************************** 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) Posture and movement 2 – moving well with MS (February 2013) MS in the family: The man’s guide to caring for someone with MS (February 2013) Balance and MS (April 2013) For a list of all the MS Society’s key publications showing the latest editions and revisions visit the website: www.mssociety.org.uk/ms- resources/key-publications or call 0300 1000 801. To contact the MS Society Information Team: Email infoteam@mssociety.org.uk or call 020 8438 0799 (weekdays 9am- 4pm)
  • Page 19 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 Big Multiple Sclerosis Breakthrough http://www.northwestern.edu/newscenter/stories/2013/06/b ig-multiple-sclerosis-breakthrough.html Multiple sclerosis patients are missing out on drugs http://www.bbc.co.uk/news/health-22307916 UB Studies Link Thalamus Atrophy to MS; Suggest Evaluation Tool http://medicine.buffalo.edu/news_and_events/research- news.host.html/content/shared/smbs/news/2013/06/ms- thalamus-2481.detail.html Danish woman runs 366 marathons in 365 days http://www.dailymail.co.uk/news/article-2366716/Annette- Fredskov-runs-366-marathons-365-days-says-cured- multiple-sclerosis.html MS hope from 'off-the-shelf' drugs http://www.bbc.co.uk/news/health-23327835 ENS 2013: DMF or BG12 works in early MS http://multiple-sclerosis- research.blogspot.co.uk/2013/06/ens-2013-dmf-or-bg12- works-in-early- ms.html?utm_source=feedburner&utm_medium=email&ut m_campaign=Feed:+blogspot/WvYVL+%28Multiple+Sclero sis+Research%29 New data shows Gilenya benefited multiple sclerosis http://www.pharmacyeurope.net/default.asp?title=New_dat a_shows_Gilenya_benefited_multiple_sclerosis&page=arti cle.display&article.id=30093 Sanofi wins EU green light for new MS drug Lemtrada http://www.reuters.com/article/2013/ 06/28/sanofi-europe-lemtrada- idUSWLB003RH20130628 Brain controlled drone could help disabled control wheelchairs http://www.examiner.com/article/brai n-controlled-drone-could-help- disabled-control-wheelchairs Online Program Boosts Mobility for MS Patients http://www.medpagetoday.com/Meet ingCoverage/CMSC-ACTRIMS/39534 Multiple Sclerosis sufferer skydives to raise £1,000 for MS charity http://www.walesonline.co.uk/news/l ocal-news/multiple-sclerosis- sufferer-skydives-raise-4025468 Novartis launches new campaign to raise awareness of multiple sclerosis http://www.pharmabiz.com/NewsDet ails.aspx?aid=75601&sid=2 New MS research charity http://www.shetnews.co.uk/newsbite s/6831-new-ms-research-charity
  • Page 20 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 by donations, which are used for various purposes. They include grants for individuals to help them attend MS- related events, contributions to research projects, and administration costs. The Amiloride and Phenytoin projects Asian MS has earmarked a £1,000 donation for 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 are 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 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, which will 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
  • Page 21 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: 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 MS’ers): http://www.shift.ms/index.php MS Research Blog (run by Barts & The London Neuroimmunology Group): http://multiple-sclerosis-research.blogspot.com