Autumn Issue 2011

Asian MS Newsletter
Asian MS Annual Meeting - Saturday 21st May at MSNC, London
The Asian MS Annual Meeting was an overwhelming success this year, with around 60 attendees! The Rose Room at the MS Society National Centre (MSNC) was packed with Asian MS members, as well as friends and family of Amrit Gajjar, who received a shining star award for his outstanding contribution to Asian MS over many years. Two trustees, John Litchfield and John Miller, attended the event and voiced their support for Asian MS at the highest level. Other key figures from the MS Society were also present: Ronald Fernandes (MS Society Helpline Manager) and Diana Gornall (Head of Community Fundraising). They were on hand to answer members queries. Riina Heinonen, Senior Research Officer, talked about the MS Register and highlighted the importance of signing up to this project. The MS Register is a world first. Your contribution to the Register means we can understand more about how MS affects peoples lives. Please sign up at: http://live.mssociety.org.uk/getinvolved/msregister No Asian MS event is ever complete without food; we were treated to high tea Asian-style, sponsored by two of our members. It was a great opportunity for all to network and mingle. It was an informative and fun-filled afternoon for all our guests, and a big thanks goes to all the Asian MS volunteers who helped out, especially Chanda Dewji and Rita Sharma, who took care of the kitchen. In addition, the staff at the MS Society were very helpful - Saher Usmani, Belinda Goodman and Anna Zastryzna. One MS Society staff member commented how wonderful it was to meet so many pleasant people.

Election & Introducing the Asian MS Committee 2011-12

Vinnie Kochhar - Chair Sanjay Chadha Founder/Committee Member Anisha Gangotra - Social Secretary Mukesh Jethwa - Fundraising Officer Abul Kamali - Website Officer Rani Kaur - Publicity Officer/Support Officer Vicky Rose - Minutes Secretary Shiv Sharma - Treasurer Gurjit Sihota - Co-Founder Bhupindar Sually - Committee Member Ila Gangotra - Committee Member

Contact details: asianms@mssociety.org.uk 1

Asian MS Members Special Report

Our very own Amrit Gajjar received a Shining Star Award for his services to Asian MS. He has been a loyal supporter for over 12 years. Sanjay Chadha presented the award in our annual meeting. He has been a full time carer for his wife and is a prolific fundraiser. He has been instrumental in raising the Asian MS profile. Amrit was also invited to Downing Street by the MS Society, as part of Carers Week. He met David Cameron on 15th June, along with several members of staff from MSNC. He has also been shortlisted as a finalist for the MS Carer of the Year award at the MS Society Awards on 27th September. ******* Co-founder of Asian MS Sanjay Chadha is standing for election as a member of the England Council of the MS Society. His election would be a great achievement and would put Asian MS firmly on the map. Please vote for him; you should receive voting forms from the MS Society, if you are a member and live in London. You still have time to vote!

VOLUNTEER DRIVE
Asian MS Social Secretary, Anisha Gangotra, highlighted the importance of having more volunteers during the Asian MS annual meeting. She spoke about being elected to the committee one year ago and stressed the need for more help from members. She spoke about the many events she had attended, which always involved good food, and making many friends! Anisha also talked about the launch of the Asian MS newsletter and requested members to get in touch if they would like to highlight any information that they would like to be circulated to other members. Asian MS Fundraising Officer, Mukesh Jethwa, stressed that more members are needed to raise awareness and funds. He pointed out that all the committee members are volunteers and that a wide range of skills are required to ensure the future success of Asian MS. Mukesh also made a plea for more volunteers and said he would be happy for any contributions, big or small, in terms of ideas and time.

MS Register www.ukmsregister.org
The MS Register is the worlds first register for MS. Your contribution to the Register means we can understand more about how MS affects peoples lives in the UK. Please sign up at:

http://live.mssociety.org.uk/getinvolved/msregister

The MS Society AGM was held on 10th September 2011 in London. To see a webcast from the day please go to: http://www.voiceprompt.co.uk/mssociety/agm11/ Find us at: http://www.facebook.com/AsiansWithMS

ONLINE MEDIA

http://www.mssociety.org.uk/mssupport/support-groups/asian-ms Follow us on Twitter: http://twitter.com/AsianswithMS

EVENTS

KEY DATES FOR YOUR DIARY

20th November 2011 Asian MS Social (TBC)
Asian MS is planning to hold a social for members and non-members to get together and have a meal, somewhere in London. We also hope to have a speaker from the world of MS for the event. We are currently looking at venues so keep an eye out for more information coming soon and keep that date free in your diaries!

RECENT EVENTS
Clearing the Fog: MS Researchers Work Towards Better Communication Asian MS member Trishna Bharadia and committee member Ila Gangotra were part of a layman audience panel put together to help researchers from Barts and the London, Queen Mary University improve their communications skills. It was an initiative that saw a series of communications workshops culminating in the Digesting Science event on 25th July in Whitechapel (London), where researchers put their new-found skills to the test in a meet-and-greet with MSers and their families. For a full run down on what happened visit:
http://shift.ms/magazine/2011/08/clearing-the-fog-msresearchers-work-towards-better-communication/

28th January 2012 - MS Research Day in London

Barts and the London Neuroimmunology Group will be holding their third annual Research Day for people with MS and their families on Saturday 28th January 2012. The event will be held at Church House Conference Centre, Deans Yard, Westminster, London SW1P 3NZ. Its a chance for people to hear about the MS research being conducted by the group and to ask the team questions. Topics discussed at previous research days include: Vitamin D, EBV & MS, MS Sibling Study, Emerging MS Therapies and What is the evidence remyelination occurs? For further information, please contact Maria Espasandin via email at m.espasandin@qmul.ac.uk or by telephone on 020 7377 7000 ext. 3303.

14th-15th April 2012 - MS Life, Manchester

The largest event in Europe for people affected by MS. It will include research talks, workshops, lifestyle events and an exhibition. More details will follow in the Winter edition of the Asian MS newsletter.

MS WEEK 2012 will be 30th April 6th May!

Barts and the London NHS Trust MS Preceptorship Program Trishna Bharadia also spoke about being diagnosed with and living with MS at the Barts and the London NHS Trust MS Preceptorship Program in August. A preceptorship is a period of practical training and experience that is supervised by an expert in a particular field. The MS Preceptorship at Barts is run by Prof. Gavin Giovannoni, and in attendance were people from around the world who work at pharmaceuticals firm Novartis. The three-day program concentrated on areas of MS that are crucial to optimising early diagnosis and long-term, multidisciplinary management of MS patients. It included medical-based and research-based talks, as well as sessions with MS patients. Trishna received positive feedback from the participants, who were very interested in the specific issues that face MS patients in the Asian community.
If you would like a copy of the MS Societys latest MS booklet, which has been translated into 12 languages, including Urdu, Hindi, Punjabi, Bengali, Gujerati and Farsi, please contact Saher Usmani on 0208 438 0856 or susmani@mssociety.org.uk

Are you a relative or friend of someone with MS?

If you have a family member or friend with MS, a health charity website is looking for your help. Health Talk Online (www.healthtalkonline.org) is based at the University of Oxford and has support from the Department of Health. They would like to speak with people who are affected by MS through knowing someone with the condition, whether or not they actually consider themselves to be a carer. The research project, which has approval from an NHS Ethics Committee, aims to help others in a similar situation. People interested in participating would be interviewed by a researcher about their experiences, at a place that is convenient to them. The project will run between May and December 2011.

TAKE AN ADVENTUROUS SHORT BREAK

The Calvert Trust, a charity that offers activity holidays to people of all ages and abilities, is holding a taster weekend in October for people with MS, their carers and families, at its Kielder centre in Northumberland. The MS Society is collaborating with the Calvert Trust to promote this event to volunteers, members and people affected by MS, who may want to try an adventurous short break in safe and accessible woodland surroundings. The weekend is an opportunity to sample the centres facilities and activities, including a hydrotherapy pool, sensory room, aromatherapy, archery, indoor climbing, water sports and evening entertainment. All accommodation is fully accessible, most rooms having en-suites with level entry shower rooms or bathrooms. Equipment such as ceiling hoists and cot sides are readily available. The weekend runs from 14th-16th October. The cost is 100 per person or 385 per person for the full respite care package. Prices include meals, accommodation and activities, and care assistance is provided as part of the respite care package. The MS Societys Short Breaks and Activities (SBA) Fund may be able to contribute towards the costs of the weekend. To apply for a grant contact the Grants team on 020 8438 0700 or grants@mssociety.org.uk. If you live in Scotland, please call 0131 335 4050 or email grantsscotland@mssociety.org.uk To find out more or to make a provisional booking for the taster weekend, call The Calvert Trust on 01434 250232 or email enquiries@calvert-kielder.com Their website is www.calvert-trust.org.uk

For further information please contact:

FRANCIE SMEE Health Experiences Research Group Dept. of Primary Health Care University of Oxford 23-28 Hythe Bridge Street Oxford OX1 2ET Tel: 01865-289328 (24-hour answerphone) Email: francie.smee@phc.ox.ac.uk

Hockey BBQ raises funds for Asian MS

Members of the Thursday XI social hockey group at Eastcote HC in Ruislip (London) helped to raise over 250 for Asian MS during a raffle at their annual summer barbecue. The raffle was run by Asian MS committee member Ila Gangotra, with prizes that had been kindly donated by Thursday XI members. The fundraising event also raised awareness about MS in the Asian community, given that the Thursday XI group is composed of predominantly Asian members. A big thanks to all those who donated and purchased tickets!

Presentation of the cheque to Asian MS

A CHANCE TO GET INVOLVED

Make your MP aware of issues facing MSers
Help beat the MS postcode lottery! Send a letter to your local MP through the MS Society's website to encourage them to visit the MS Society's stand at the party conferences. It's quick and easy to do and will help to raise awareness among MPs of the issues that face people with MS. Just go to the following link for more information and to get a template:

Latest Research & MS in the news

Percutaneous Venoplasty http://www.google.com/hostednews/uk press/article/ALeqM5hFfzDwSbc_174M nzjBHBgLnRhgXg?docId=N0543671314 099887944A Genetic clues about MS http://www.dailymail.co.uk/health/articl e-2024847/Multiple-sclerosis-studydoubles-number-genes-knowncontribute-disease.html MS & Vitamin D research with Dr. Ram http://www.dailymail.co.uk/health/articl e-2025648/Why-sunshine-ease-MultipleSclerosis-symptoms.html?ito=feedsnewsxml Botox as an incontinence treatment for MSers http://www.thesun.co.uk/sol/homepage/ news/3740787/Botox-used-to-cureweak-bladders.html?OTCRSS&ATTR=News MS cure a step closer with new discovery http://www.independent.co.uk/news/sci ence/ms-cure-a-step-closer-with-newdiscovery-2303220.html Breakthrough in repairing genetic defects http://www.guardian.co.uk/science/201 1/jun/26/doctors-breakthroughrepairing-genetic-defects

http://e-activist.com/eaaction/action?ea.client.id=1692&ea.campaign.id=11529 New online community for younger MSers

Shift.ms is a web-based charity for young people affected by MS. It acts as a support network for members and has also recently launched an online magazine. It actively encourages members to share their experiences and make contributions. To see what its about, visit: http://www.shift.ms/index.php

MS Research Blog
This blog is run by Barts and The London Neuroimmunology Group. Its aim is to keep people updated about the latest MS research, with an emphasis on studies being conducted by the group. The main blogger is Prof. Gavin Giovannoni, a neurologist based at the Royal London hospital. There is also much room for debate with Prof G (as he is known!), as readers are able to post comments and ask questions about the information posted. http://multiple-sclerosis-research.blogspot.com

Koffman Project - Dr Jonathan Koffman, Kings College, London. The purpose of this study is to examine the experience of MS across different cultural groups living in London, and explore their awareness of, attitudes to, and preferences for palliative care and related services.
If you know of someone wanting to raise money for charity, why not suggest to them they fundraise for Asian MS? Please get in touch with Fundraising Officer, Mukesh Jethwa. Fundraising ideas could include sponsored runs/walks, raffles, auctions, dinner/dances and cake bakes: asianms@mssociety.org.uk Keep on running..... ....Shiv Sharmas brother and niece are doing the Great North Run for the MS Society on 18th September 2011: http://www.justgiving.com/MSGNR

A short video produced by Shift.ms about MS & Vitamin D, featuring Dr. Ram: http://www.youtube.com/watch?v=LcA0 qlLFs_c&feature=player_embedded

Deadline for submissions for the Newsletters Winter Issue is 31st November 2011. Please send your stories, photos, links and news to: asianms@mssociety.org.uk

MS SOCIETY EVENTS
Living With MS -This is a free information day for people with MS and their families, carers and friends. It offers an opportunity to learn about MS and how to manage your life if you have it. BASINGSTOKE 24 September 9am-4pm; Hilton Basingstoke, RG21 3PR Go to http://www.mssociety.org.uk/msevents/2011/08/living-ms-%E2%80%93-basingstoke or call 020 8438 0941 for more information and to book a place. BROMSGROVE 15 October 9am-4pm; Hilton Bromsgrove, B61 0JB Go to http://www.mssociety.org.uk/msevents/2011/08/living-ms-%E2%80%93-bromsgrove or call 020 8438 0941 for more information and to book a place. HATFIELD 6 November 9am-4pm; Postcode AL10 9NG Booking will be available two months before the event date. Email conferenceadmin@mssociety.org.uk to register your interest. CHESHIRE 19 November 9am-3.45pm; Byley Lane Cranage, CW4 8EW (Note: This event is specifically for Primary Progressive MS) Booking will be available two months before the event date. Email conferenceadmin@mssociety.org.uk to register your interest. ****** MS with Attitude WELSHPOOL 24 September 10am-4pm; Red Ridge Centre, SY21 0AZ A chance to try some new activities or activities that you thought were no longer possible, including zip wires, canoeing, horse riding, alternative therapies and lots more. For more information see: http://www.mssociety.org.uk/ms-events/2011/08/msattitude-welshpool or contact Sue Jones on 01633 889290 or sjones@mssociety.org.uk ****** MS Space - LANARKSHIRE 30 September 9.45am-3.45pm; The Westerwood Hotel & Golf Resort, G68 0EW A regional event that includes the latest MS research and information. Suitable for people with MS, their families and carers. For more information: http://www.mssociety.org.uk/ms-events/2011/06/msspace-lanarkshire
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MS Society Awareness Talk: MS in your life? Your side of the story - MAIDSTONE 8 October 11am-2pm; Hilton Maidstone, ME14 5AA Three parallel sessions: I have MS, independence and control, Adult carers, looking after yourself, and Young carers, making life a little bit easier. For more information: http://www.mssociety.org.uk/msevents/2011/09/ms-society-awareness-talk-msyour-life-your-side-story ****** Self-Management Courses (6 weeks) Suitable for over-18s who have MS BRIDGE OF WEIR 24 October until 28 November 1.30pm to 4pm
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http://www.mssociety.org.uk/msevents/2011/06/self-management-course-bridgeweir EDINBURGH 25 October until 29 November 7pm to 9.30pm http://www.mssociety.org.uk/msevents/2011/06/self-management-courseedinburgh ANSTRUTHER 28 October until 2 10am to 12.30pm
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December

http://www.mssociety.org.uk/msevents/2011/06/self-management-courseanstruther ****** The Policy Forum RATHO 6 December 11am-2pm; MS Society Scotland, Ratho Park, EH28 8PP A chance for people to share their views and experiences of MS with the MS Society so that policy and campaigning is guided by people who know the most about MS you! More information: http://www.mssociety.org.uk/msevents/2011/06/policy-forum-ratho
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Webpage: http://www.mssociety.org.uk MS Society Helpline: 0808 800 8000