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Download MSA News (Issue 35 – Oct 2012) As A SYSTEM E A L T IP R T O L P U H M Y | T E R N U ISSUE 35, 2012 | WWW.MSATRUST.ORG.UK I S Z T A M G E A M M B P I E R H S RESEARCH ADVANCES offer new hope for future MSA drug developments MAKESMSA NATIONAL MEDIA DEBUT! TOP TIPS... TO HELP YOU GET A GOOD NIGHT’S SLEEP Follow us on Twitter & Facebook and help raise awareness of MSA. See our website, www.msatrust.org.uk CONTENTS PATRONS: Sir Roger Bannister CBE FRCP Multiple System Atrophy Trust Professor CJ Mathias DPhil DSc FRCP Information, support, education and research. Free services for people with MSA, carers, family, health and social care TRUSTEES: professionals. Our vision is a world free of MSA. Michael Evans (Chairman) Valentine Fleming Professor Clare Fowler CBE FRCP UK RARE DISEASE PLAN 03 Ms Darcy Hare Getting closer to launch day Alexander Loehnis Chris Marsden (Honorary Treasurer) NEWS ROUND-UP 04 Hugh Matheson Geoffrey Murray Hon Mrs Clare Powell DIRECTORY OF MSA CLINICS 05 Eileen Lady Strathnaver OBE Helping you to find your nearest specialist clinic Karen Walker DRUG DEVELOPMENTS IN MSA 06 EXECUTIVE DIRECTOR A review of recent advances AND MSA NEWS EDITOR: Nickie Roberts RESEARCH UPDATE 08 News from Trust-funded projects ALL CORRESPONDENCE AND ENQUIRIES TO: RECIPES 09 Multiple System Atrophy Trust Easy to digest meals - Beef casserole Southbank House, Black Prince Road London, SE1 7SJ FUNDRAISING 10 Tel: 020 7940 4666 Members in action! www.msatrust.org.uk SUPPORT GROUP DIRECTORY 12 The Trust is financed entirely by Dates & venues; Behind the scenes at the Kent group voluntary donations. Registered Charity Number 1137652. CARERS CORNER 14 Company Number 7302036. Sleep - it’s the quality that matters! IN MEMORY 17 MEMBERSHIP AT SEPTEMBER 2012 RAISING THE PROFILE OF MSA 18 Current MSA members 949 Spreading the word to improve understanding Carers, relatives & friends 1,309 Healthcare professionals 1,644 MSA SHOP 20 Total 3,902 Trust Christmas cards New MSA Members since 1 June 2012 67 UK RARE DISEASE PLAN The Trust is a member of the national alliance for people affected by rare diseases, Rare Disease UK (RDUK), which has recently been in discussions with the Department of Health about progress in developing the final UK rare disease plan. round 350 responses were RDUK will also be launching a services they need, when they Asubmitted to a public con- report on the value of care co- need them. They also play an sultation, and the UK’s four ordinators to patients and the important role in providing in- health departments are now health service, and need your formation and support to pa- currently working on their sum- help. tients and families about their mary of responses. These will condition. be publicly available towards REPORT ON CARE RDUK are looking to speak the end of the year. It is hoped COORDINATORS to people about their experi- that the rare disease plan will This report will investigate ences in this area. This includes be launched early next year, the benefits care coordinators patients or their carers who although given its broad scope bring both to patients and to currently benefit from a care and the need to get agreement the NHS, and will help RDUK coordinator, patients who pre- from four different health de- in its work to ensure all pa- viously had a care coordinator partments, this may be subject tients affected by multi-system but the post was discontinued to delay. RDUK are primed to rare diseases have a named due to lack of funding, people campaign for the launch of the care coordinator. RDUK has who work as care coordinators plan should this not happen in been campaigning for this to and clinicians who can speak 2012. be part of the forthcoming na- about the value of care coor- As well as continuing to in- tional plan for rare diseases. dinators. fluence NHS policy decisions, The exact role that a care If you are willing to speak to RDUK’s plans for 2013 include coordinator plays in a person’s RDUK about this topic, have contributing to the knowledge care depends on the nature of any information that might be base around rare diseases. As the condition. It can also de- useful to this work or would part of this, it will be conduct- pend on whether the role is like further information, please ing a review into how centres provided by the NHS or by contact Samantha Reeve, Pol- of excellence for rare diseases patient organisations. Care icy Research Officer at saman- would work in the context of coordinators generally ensure [email protected] or by the UK’s health systems. that a patient can access the calling her on 020 7704 3141. www.msatrust.org.uk | ISSUE 35, 2012 03 NEWS ROUND-UP GIFT AID MSA AWARENESS DAY ift Aid is an extremely important source his year’s World MSA Awareness Day took Gof income for the Trust. If you have ever Tplace on Wednesday, 3 October. made a donation to us and you are a UK tax- Across the world people affected by MSA lit payer, by completing a short Gift Aid form we candles at 8pm for one hour, creating a vir- can claim an additional 25p in every £1 you tual 24-hour wave of light across the globe as it have donated. You only need to fill out the form moved from time zone to time zone. once, meaning this is an easy way for your do- Many people also walked one mile for MSA, nation to go that little bit further and make with the aim that everyone affected by multiple even more of a difference. A copy of our Gift system atrophy collectively walked around the Aid form is available on our website or call the earth (ie, 24,901 miles at the equator). Trust’s office and we’ll pop a copy of the form in the post to you. Last year, we claimed an additional £12,000 in Gift Aid, enabling us to NEW HEAD OF provide further support to all those affected by MSA. FUNDRAISING e’re delighted A CALL TO ALL HEALTH Wto report that we have successfully AND SOCIAL CARE appointed into our newly created Head of PROFESSIONALS Fundraising position, established to help he Trust is conducting its first health and secure much needed Tsocial care professionals’ survey to provide funds for our support a greater understanding of how the Trust could services and research be supporting professionals treating patients projects. with MSA. Katie Heyward joined us in August, and The survey should take around ten minutes brings with her extensive experience. She says, to complete, and can be accessed through the “There is no doubt this is an exciting time for Healthcare Professionals section of the Trust’s the Trust and I’m looking forward to securing website: www.msatrust.org.uk. essential funds to enable the charity to success- It’s important to gather responses from fully carry out its work, now and in the fu- health and social care professionals who have ture.” not yet encountered MSA, so please encourage Katie can be contacted at the Trust’s office work colleagues and contacts to complete the on 020 7940 4666 or by emailing her at katie. survey too. [email protected]. Findings will be available on the Trust’s web- site later in the year. 04 ISSUE 35, 2012 | www.msatrust.org.uk DIRECTORY OF MSA CLINICS lthough it is usually Dr Alex Gerhard Dr Huw Morris Athe case in the UK for Salford Royal NHS Foundation Royal Gwent Hospital people with MSA to be seen Trust Newport, Gwent, NP20 4UB in general neurology clinics, Stott Lane, Salford, M6 8HD 01633 234829 a specialised MSA clinic can 0161 206 4100 provide more in-depth care Dr James Rowe including diagnosis, symptom Dr Marios Hadjivassiliou Disorders of Movement and management and on-going Royal Hallamshire Hospital Cognition Clinic support for the person with Glossop Road Cambridge University MSA as well as their families. Sheffield, S10 2JF Department of Clinical 0114 271 1900 Neurosciences This directory has been Herchel-Smith Building compiled to help you find Professor Henry Houlden Forvie Site, Robinson Way an MSA clinic if you would National Hospital for Neurology Cambridge, CB2 0SZ like your GP to refer you. If and Neurosurgery 01223 760696 you have any queries, please Queen Square contact Lyn Shaw at the London, WC1N 3BG Dr Anirban (Romi) Saha Trust on 020 7940 4666 or 020 7837 3611 Hove Poly Clinic email [email protected]. Nevill Avenue Dr Michelle Hu Hove, East Sussex, BN3 7HY John Radcliffe Hospital 01273 696955 (Secretary Sharon Dr Thomas Bak Headley Way, Oxford, OX3 9DU Elder, Royal Sussex County 7 George Square, Edinburgh 01865 741166 Hospital) EH8 9JZ 0131 650 3441 Professor Nigel Leigh Professor Kevin Talbot Hurstwood Park Neurological Nuffield Department of Clinical Professor David Burn Centre Neurosciences Department of Neurology Lewes Road, Haywards Heath West Wing Queen Victoria Road West Sussex, RH16 4EX John Radcliffe Hospital Royal Victoria Infirmary 01273 696955 (Sharon Elder – Oxford, OX3 9DU Newcastle Upon Tyne, NE1 4LP same secretary as for Dr Saha) 01865 231893 0191 282 3697 Fiona Murphy PNS Professor Zcyicek Dr Jonathan Frankel and Dr Mount Gould Hospital Derriford Hospital Alice Manson Mount Gould, Plymouth Derriford Road, Crownhill Southampton General Hospital Devon, PL4 7QD Plymouth, Devon , PL6 8DH (and Isle of Wight) 01752 268011 01752 202082 Tremona Road Southampton, SO16 6YD 023 8077 7222 www.msatrust.org.uk | ISSUE 35, 2012 05 THE PRESENT & FUTURE OF DRUG DEVELOPMENT IN MSA Recent advances have generated new hope for future drug development in MSA.
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