Beruflich Dokumente
Kultur Dokumente
There were several talks during the day. Trishna gave a presentation entitled What is MS?, which was well-received by attendees, particularly those who had no or little knowledge about the condition. Anisha spoke about volunteering for Asian MS and why the support group is needed. Angela Outerbridge from the Chilterns MS Therapy Centre gave a wonderful talk about the benefits of physiotherapy and exercise for people with MS, while Susan Allison from the MS Society spoke about the role of carers and Carers Week. No Asian MS event would be complete without food and we were lucky to be able to enjoy kind donations from the local Sikh temple, The Handmade Cake Company and Saher Usmanis mum, who made sure that there were lots of delicious things to eat. Members of the Hindu Society of Maidenhead gave up their time to help serve the food, which was also very much appreciated. A raffle on the day managed to raise 130 so thank you to everyone who donated prizes and bought tickets!
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
VINNIE Chair
SHIV Treasurer
In addition to those people/organisations that have already been mentioned, wed also like to express our sincere thanks and gratitude to: Key Circle Pharmacy, Pencarrie UKL, Stiga Table Tennis Company, John Lewis, Waitrose Maidenhead, Amber Zone, Brenda Stores, BTS, Yonex, The Pincushion, Thames Valley Sports, St Marks Florist, Gordon Stores, Londis, The Book Company, Saher Usmani, and The Kochhar family.
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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
We rely on volunteers and there is always more work than there are hands to get it done! If youd like to get involved please let us know. Specifically, were currently looking for a Membership Secretary and a Website Editor. More details are in this newsletter and an email will be going out soon too. Enjoy this edition and please pass it on to anyone who you think may be interested in our work. -Trishna x
CONTENTS -Asian MS Annual Meeting & Meet The New Committee.p.1-2 -A message from the Editor.p.3 -Asian MS News (including MS Life).p.4 -A chance to get involved..p.5-7 -Looking for people for MS Films; Trishnas Top Tips.p.8 -Dates for your Diary; The Priority Services Register.p.9 -Holidays & MS; Recipes from Lubna.p.10-11 -General information and literature.p.12 -Latest research and MS in the News.p.13 -Fundraising for Asian MS.p.14 -Useful information and contacts.p.15
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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
Deadline for the Autumn Edition of the newsletter is 7th September 2012. Please send your stories, links, photos and news to
asianms@mssociety.org.uk
Asian MS at MS Life
ASIAN MS NEWS
Asian MS was present at MS Life in Manchester over the weekend of 14-15 April 2012. Not only did we have an information stand, we also did a presentation as part of The MS Societys Shining Star Award is an annual scheme to the National Support Groups workshop on the second recognise outstanding contribution day of the event.
We signed up a significant number of new members and many people visiting the stand remarked how welcoming and friendly Asian MS is! The National Support Groups workshop gave us a chance to explain to attendees why Asian MS is needed and how they can get involved. Committee members Shiv, Anisha and Trishna (pictured) all gave short presentations and Rani tweeted and updated the Asian MS Facebook page throughout the workshop. The weekend was filled with talks and workshops dealing with all aspects of MS, from research to lifestyle issues to mental and physical wellbeing. For those of you who were unable to make it, there are some videos available on the MS Societys You Tube channel and Facebook page.
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Dr. Sreeram Ramagopalan was nominated for a Shining Star Award by Asian MS and this was presented to him during our Annual Meeting. Dr. Ram (as he is known!) works in MS research, mainly in Vitamin D and epidemiology. He regularly gives up his own time to speak at events, such as MS information days and is always willing to go that extra mile to make sure people have information available to them. Hes made research accessible and easy to understand. He has also been very active in promoting and helping MS charities, including Asian MS. Well done Ram!!
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
The study aims to test the safety of the drug in humans and to evaluate the effects of ATX-MS1467 on the underlying causes of MS. ATX-MS-1467 has undergone tests in laboratory models and no significant problems were seen. The drug has also been tested in a previous clinical trial in six people with SPMS. During that study, the people reported minimal side effects. There are various eligibility criteria in order to be considered for this study and recruitment will only continue whilst there are places available. For more information please go to: http://www.mssociety.org.uk/sites/default/files/D ocuments/Research/Apitope%20study.pdf
To be eligible, you must have relapsing-remitting MS, be within ten years of your first MS symptoms, The MS Register is a be able to walk without aids and have had at least ground-breaking study 2 clinical episodes of MS in the previous 2 years. designed to increase our These relapses may have occurred whilst on understanding of living with disease-modifying therapy. MS in the UK. You can take part by completing a series of simple online questionnaires. For further information and to view a Patient
Information Sheet, please go to : If you are over the age of 18 and living in the UK, http://www.colescambridge.org.uk/trial%20part with a confirmed diagnosis of MS made by a icipation.htm 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 ATX-MS-1467 is a new investigational drug being Hospital, Belfast; Western General Hospital, tested as a possible treatment for relapsing forms Edinburgh; St. Marys Hospital, London; Queens of MS. Investigational drug means it has not been Medical Centre, Nottingham; and Morriston approved for general use by government health Hospital, Swansea. authorities, however, it can be tested in research http://www.ukmsregister.org studies.
APITOPE STUDY
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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
FEEDBACK NEEDED!
Asian MS would like to receive your feedback about our quarterly newsletter. Please go to the following link to complete the survey: http://www.surveymonkey.com/s/88 HDQL6
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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
The MS Society has produced some videos designed to spark interest and encourage people to The Centre for Research in Rehabilitation at Brunel University would like to invite you to participate in think what it might be like this study as part of a PhD project. The research will to live with MS. You can be led by Andrea Stennett, Physiotherapist, under watch them at: the supervision of Professor Lorraine DeSouza and www.msfightback.org.uk, and share them Dr. Meriel Norris. with your own networks to spread the word You must be 18 years or older, have a diagnosis of and encourage people you know to join the MS and be living within the community. They will be Fightback against MS.
using a technique known as the Delphi Method to explore your views of exercise and physical activity. You do not have to be physically active to take part in this study. Your involvement would require you to complete three rounds of questionnaires, with a gap of up to two months between each round. If you are interested in this research, please contact Andrea Stennett for a research pack. Please note that requesting a research pack does not oblige you to participate in the study. Contact details: Andrea Stennett, Tel: 01895268729, email: andrea.stennett@brunel.ac.uk
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.or g.uk/ms-research/getinvolved-in-research
Your Asian MS Newsletter Editor has been moonlighting (!) and has also been making regular contributions to the Shift.ms MINNOW FILMS is looking for magazine. Her latest article looks at the people willing to share their life various perks that MSers are able to access story living with MS. (depending on disability levels). It includes Were you diagnosed 3 -12 years information on cheaper rail fares, the Priority ago? Services Register of energy suppliers (also see Have you had to make some tough p.9 of this newsletter), free cinema/concert decisions over the years? tickets for carers/helpers, radar keys, Blue Would you like to inspire others Badges and bus passes. For more information with your story? go to: http://shift.ms/2012/06/trishnas-topThey are currently developing a short tips-perks-you-should-know/#commentdocumentary film project about people 8871 living with MS. They are particularly keen on finding people who are articulate about their current and past experiences, as they want the films to be reflective. FUNDRAISING FOR ASIAN MS If you are open and insightful, with a If you are interested in positive outlook on life they would like fundraising for Asian MS, please to hear from you. Their goal is to tell the contact our fundraising officer, stories of engaging men and women Mukesh Jethwa on whose lives have taken different turns but asianms@mssociety.org.uk nevertheless made them the people they are today. 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.
Please contact Salma on salma@minnowfilms.co.uk Or call 020 7078 8166 for more information.
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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
-Of pensionable age-Chronically sick-Blind or partially sighted-Deaf or partially deaf-Have mental health problems-Disabled in any other way-
If you know someone who is likely to be vulnerable in the event of an electrical power cut (remember that most of the self-injection MS medications need to be kept refrigerated), an outage of gas supply or the water supply being cut off, encourage them to register with either their utility suppliers (the company that sends their bill) or the companies which transport the gas or distribute the electricity to their home and their local water company. You can find out more on the Consumer Focus website at: www.consumerfocus.org.uk/getadvice/energy/households/help-for-vulnerableconsumers If someone has trouble paying their utility bills, they should also contact the billing company or provider of the utility which have Trusts to help those in hardship.
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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
Medication Make sure you pack enough Insurance Make sure you take out travel medication, plus some extra just in case. If insurance. You will need to declare your MS youre on one of the disease modifying to the insurance provider some companies drugs that need to be kept under 25oC then will cover it, while others will exclude it from make sure you have the correct travelling the policy. It may be worth shopping around bags and ice bricks/cool packs. You will also and the MS Society provides some need to remember to arrange for information about the topic. Please see the refrigeration at your destination, if youre travelling to a website for more information. hot country. You will Accessibility If you require facilities that are need to get a letter from your wheelchair accessible or MS nurse to show to airport you arent able to security/customs, as most MS manage lots of stairs, medication needs to travel with you in your then forward planning is hand luggage. Dont forget this, as you could a must to ensure that be otherwise stopped from taking your your holiday is as stressdrugs with you. Its also a good idea to let free as possible. There are many websites the airline know beforehand that youll be available that offer information about travelling with medication, as they can often accessible travel and can recommend make a note on your reservation. If youre accommodation. Just type accessible travel on hospital-based infusions then you will into an online search engine! need to arrange with your MS care team when would be the best time to travel, so that you dont miss out on a dose.
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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
Heat Many people with MS find their symptoms worsen in heat. So if youre travelling to a hot country, ensure that you drink cool drinks, wear loose and cool clothing, and put on a hat. If necessary, do indoor things during the hottest part of the day and make the most of the mornings and evenings outdoors, when the heat is less intense. Cool sprays and fans can also be a good idea, as is taking a cool shower before and after any activity that involves becoming hot. Staying healthy Being ill can worsen your MS symptoms and you dont want your holiday ruined because youre feeling under the weather. Ensure you pack a first aid kit that contains essentials such as painkillers, insect repellant (if necessary), rehydration powders/tablets in case of diarrhoea, antiseptic and alcohol gel etc. Double check which vaccinations you may need and remember to mention that you have MS, as some live vaccines (particularly if youre visiting tropical destinations such as Africa) are unsuitable for people with MS or who are on immunosuppressant therapy. Also remember to be sensible when it comes to eating and drinking, particularly if youre travelling to a country where safe drinking water may be an issue. Finally, if youre looking for inspiration to go and book that flight, this article is well worth a read! http://www.bbc.co.uk/news/health17786085
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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
General Information
Information New Information Booklets Available The MS Society has a range of publications Employment and Support Allowance containing information and advice for carers and (ESA) (MS Essentials 29) families: Disease modifying drugs (MS Caring for someone with MS: a handbook for Essentials 06) family and friends Sex, intimacy and relationships (MS MS in your life a guide for young carers Essentials 12) MS Carers: The mans guide to caring for Swallowing difficulties (MS someone with Multiple Sclerosis Essentials 24) You can order these from the Information team Note: The MS Essentials factsheet for by calling 020 8438 0799 or from the online shop Critical Illness insurance (September 2009) has been withdrawn. For information on on the MS Society website. this topic please go to www.moneyadviceservice.org.uk Financial assistance There are two grant funds specifically for carers For a list of all the MS Societys key Young Carers Fund publications showing the latest editions Carers Opportunities Fund. and revisions visit the website: There is also support for carers through the www.mssociety.org.uk/msShort Breaks and Activities Fund. Carers can resources/key-publications or call 0300 apply to this for funding towards short breaks 1000 801. and holidays. Find out more from the Grants Team on 020 To contact the MS Society Information 8438 0700 or grants@mssociety.org.uk or visit Team: Email infoteam@mssociety.org.uk the grants pages on the website. If you live in Scotland, please call 0131 335 4050 or call 020 8438 0799 (weekdays 9am4pm) or email grantsscotland@mssociety.org.uk *********************************** Emotional support The MS Helpline is available to give free and If you would like a copy of the MS confidential advice and support to anyone Societys latest MS booklet, which has affected by MS from 9am-9pm, Monday- Friday. been translated into 12 languages It is also open for a trial period on Saturdays including Urdu, Hindi, Punjabi, from 10am-1pm until 20th October. The helpline Bengali, Gujerati and Farsi, please number is freephone 0808 800 8000. Please contact Saher Usmani on 0208 438 0856 specify if you would like to speak with someone or susmani@mssociety.org.uk from Asian MS and you will be directed to one of our support officers. ***********************************
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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
http://multiple-sclerosis-research.blogspot.co.uk/2012/06/research-sclersosis-ms-and-als-are-not.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
Asian MS are proud to announce that they now have the facilities to allow people to make donations to them 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