HARNESSING YOUR KNOWLEDGE WE LAUNCH OUR MSA LOCAL HUB Follow Us on Twitter & Facebook and Help Raise Awareness of MSA

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ISSUE 36, 2013 | WWW.MSATRUST.ORG.UK “MOTHER OF GYMNASTICS” pledges support to beat MSA

VALENTINE FLEMING Founder Trustee RETIRES HARNESSING YOUR KNOWLEDGE WE LAUNCH OUR MSA LOCAL HUB 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 care TRUSTEES: professionals. Our vision is a world free of MSA. Michael Evans (Chairman) Professor Clare Fowler CBE FRCP Ms Darcy Hare THANK YOU 03 Alexander Loehnis To Founder Trustee, Valentine Fleming Chris Marsden (Honorary Treasurer) Hugh Matheson MSA - HELP US TO SPREAD THE WORD; 04 Geoffrey Murray CAMPAIGNING FOR LOCAL ACTION ON Hon Mrs Clare Powell NEUROLOGICAL ISSUES Eileen Lady Strathnaver OBE Karen Walker NEWS ROUND-UP 05

EXECUTIVE DIRECTOR AND MSA NEWS EDITOR: CARING FOR YOUR BACK 06 Nickie Roberts

ALL CORRESPONDENCE AND HARNESSING KNOWLEDGE 08 ENQUIRIES TO: The Trust’s Local Hub Multiple System Atrophy Trust Southbank House, Black Prince Road OLGA KORBUT JOINS FIGHT AGAINST MSA 10 London, SE1 7SJ Tel: 020 7940 4666 www.msatrust.org.uk RECIPES 12 Easy to digest meals - Puddings The Trust is financed entirely by voluntary donations. TRUST PLANS 13 Registered Charity Number 1137652. Supporting the health and care community Company Number 7302036. MSA SUPPORT GROUP DIRECTORY 14

FUNDRAISING R0UND-UP 16 MEMBERSHIP AT FEBRUARY 2013 Current MSA members 978 BENEFIT CHANGES 18 Carers, relatives & friends 1,404 What do they mean for you? Healthcare professionals 1,747 Total 4,129 IN MEMORY 19 New MSA Members since 1 November 2012 88 MSA TRUST T-SHIRTS 20 THANK YOU TO FOUNDER TRUSTEE, VALENTINE FLEMING Valentine Fleming

Valentine Fleming, Founder Trustee, first Trust Chairman and our invaluable and dedicated friend, retired from the Board at the end of 2012.

s an old friend of Sarah readily understand – no mean 14 members when we started; AMatheson, he responded feat. Valentine has rejoiced in there are now over 4,000. It with energy and commitment the Trust’s steady growth and is thanks to Valentine’s ini- when she first identified the success, and without his wis- tial hard work, attention to need for an organisation that dom and guidance we would detail and enthusiasm that would support those living never be where we are today. thousands of people affected with MSA and also their fami- He has been our rock, a con- by MSA have benefited from lies and carers. From the ear- stant and reassuring presence, professional help and advice in liest meetings, convened some and the Trust will be forever in coping with this devastating 16 years ago in Sarah’s sitting his debt. condition. room in Vauxhall, London, he As Sarah’s sister, I will for- has guided the Trust as it grew EILEEN LADY STRATH- ever be grateful to Valentine. and expanded into the sub- NAVER OBE, Trustee The hard work he provided stantial and influential body has been the foundation from it is today. There have been, alentine and Elizabeth which the Multiple System inevitably, some difficult times VFleming were great friends Atrophy Trust has developed along the way but he steered of Sarah and supported her and thrived. Today, most of us through with sensitivity, throughout her illness, and he the Founder Trustees have re- flexibility and a steadfast com- willingly took up the challenge tired. It is very gratifying that mitment to the Trust’s prin- to set up a charity dedicated the Trust’s future is secure and cipal aim, the support of our to helping people with MSA. is run by a very able group of members. He excelled in the roles he un- Trustees, all of whom have After an initial spell as dertook and wrote the most been touched by the sadness of Chairman, he took on the role beautiful letters in longhand, MSA, supported by Specialist of Treasurer. For many years both in thanks for donations Nurses and a team of dedicat- he kept on top of a formida- and to all and sundry, such as ed professional staff. ble amount of paperwork and grant-giving trusts, major do- produced regular, meticulous nors and doctors. Nothing was ELIZABETH BRACKEN- records of the Trust’s accounts too much trouble. Even the BURY, former Trustee and which the rest of his less nu- smallest donation received a East Midlands Support Group merate Trust colleagues could handwritten letter. There were Leader

www.msatrust.org.uk | ISSUE 36, 2013 03 HELP US TO CAMPAIGNING FOR LOCAL SPREAD ACTION ON THE WORD! NEUROLOGICAL ISSUES March is MSA awareness month and we need your The Neurological Alliance is looking for people to help help to spread the word. build a regional presence by helping to set up Regional Neurological Alliances (RNAs). f you use Facebook Ior Twitter, look out for details on how you There are currently 16 RNAs, and the can add a mini-MSA Alliance is keen to find people willing to logo to your profile take up the challenge of setting up more. picture to show your The aim of RNAs is to bring together support for the Trust local people who share a commitment and help raise aware- to improving services for people with ness at the same time. a neurological condition. They are You can also check Dr Sarah Jarvis independent organisations deciding out the Trust’s web- their own workplan, but they all share site (www.msatrust. the same vision and objectives as the org.uk) to add us to your email signature so national Neurological Alliance. everybody you contact through email will learn about MSA and the work of the charity. You can find out if there is an RNA near London-based GP and journalist, Dr Sarah where you live by looking at the list Jarvis, has joined the Trust’s campaign and on the Neurological Alliance’s website says, “Multiple system atrophy is a rare disease (www.neural.org.uk); if there isn’t one which many people haven’t heard of. I’m help- nearby, the Alliance can help you set one ing to spread the word so more people know up and has produced a toolkit to guide about MSA and can be supported with their you. For more details, please contact the diagnosis. The work the Trust does is vital in Neurological Alliance on 020 7584 6457 making sure that people with MSA get the right or by emailing them on admin@neural. kind of care.” MSA org.uk.

04 ISSUE 36, 2013 | www.msatrust.org.uk NEWS ROUND-UP

INTRODUCING THE MSA IN THE SPOTLIGHT MAGAZINE’S FEATURE ince the last issue of MSA News, the Trust WRITER Shas been working steadily to increase media avin Duncan from Scotland has very gen- exposure of MSA as a way of building knowl- Gerously taken on MSA News’ first volun- edge and understanding of the disease. teer writer role. Gavin has first-hand experience Nursing Standard magazine, the number one of multiple system atrophy as his dad, Johnny, weekly magazine for nurses, ran a feature on had MSA and died in September last year. Trust MSA Specialist Nurses, Katie Rigg and Gavin’s first article for the magazine is his Samantha Pavey, which generated a significant interview with 1970s Russian Olympic medal- increase in visits to our website; Samantha ist, gymnast Olga Korbut (see page 10). Crawford and her daughter Rhanna in Falkirk, Scotland were featured in a double-page spread in the Daily Mail over Christmas; Sue Pinfield- THE INFORMATION STANDARD Wells appeared in the Bournemouth Echo talk- The Trust has been awarded the Information ing about setting a support group; and Eric Standard kitemark. This is backed by the De- Armitage has had some great coverage in the partment of Health and has been developed to Oldham Evening Chronicle and the Rochdale help guide the public to accurate and trustwor- Observer featuring his fundraising. thy information. In becoming certified, the Trust has had to demonstrate necessary methods and systems are in place to ensure the information we produce is If you have an MSA story you’d like to share, accessible, accurate, appropriately researched, please get in touch with Ellie Taylor at the authoritative, clear, complete, readable, rel- Trust on 020 7940 4666 or by email at evant, secure, up-to-date and well-designed. [email protected]. The Information Standard logo, below, is evidence of certification and will be displayed on information provided by the Trust, and any other organisation, that meets the scheme’s cri- BRAIN AWARENESS WEEK teria. The Trust is really proud to be part of rain Awareness Week takes place from 11- this scheme. B17 March 2013 and is the global campaign aimed at increasing public awareness of the progress and benefits of brain research. This year’s theme is ‘our brains matter’. Over 70 neurological conditions are taking part in the Week through umbrella organisation, the Neu- rological Alliance. The Trust is represented on the event’s organising steering committee.

www.msatrust.org.uk | ISSUE 36, 2013 05 CARING FOR YOUR BACK

Most of us will suffer back pain at some stage in our lives. Lifting the person you care for and helping them dress or move around, can place a strain on your back. However, knowing how to protect your back can help to keep it in good shape. Carer’s UK share their advice.

TRAINING AND local social services, or local may be able to show you ways PRACTICAL HELP carers’ organisation, should be to lift and move more safely. If you are regularly having to able to tell you about training Ask your GP or practice man- lift the person you care for, or opportunities on how to lift and ager for more information. help them in and out of bed, move more safely to reduce the You may be able to get you may find that this can put risk of harming your back. Al- more direct, practical help. If extra strain on your back. Your ternatively, your district nurse you’ve not had one, ask your

06 ISSUE 36, 2013 | www.msatrust.org.uk local council for a carer’s as- KEEP ACTIVE be treated with over-the-coun- sessment. This will look at Swimming, yoga, pilates, walk- ter drugs such as paracetamol your needs as a carer, and is ing, running and cycling can all or an anti-inflammatory drug a chance for you to talk about help to strengthen your back. like ibuprofen, but some people the kind of help you need. If you don’t have time to do mustn’t take these if they are This could include helping the a regular sport, simple changes taking other types of medica- person you care for to have a to your daily activities can re- tion or have particular health bath, get up in the morning or ally make a difference - walk- conditions. If in doubt, please go to bed. ing instead of using the car for consult your GP. If these don’t You may also be able to short journeys, cycling to the help with the discomfort, your have your home, or the home shops, taking the stairs instead GP might prescribe a stron- of the person you care for, of the lift or getting off the bus ger painkiller to take alongside adapted or have equipment a stop earlier than you usually them. For severe pain your GP that will help you and them. do. might prescribe a muscle re- You can ask your GP to refer If it’s been a long time since laxant. you for an occupational ther- you’ve exercised, or if you’re In some cases, a compres- apy assessment. You will get thinking about increasing the sion pack may help. Some peo- advice and perhaps alterations amount of exercise you do, dis- ple find it helps to alternate to your house or equipment to cuss it with your GP first, es- between hot and cold. You can help you. pecially if you have any health buy these or, as a homemade problems. alternative, use a hot water IMPROVE YOUR If you already have back bottle or a pack of frozen peas POSTURE problems, it doesn’t need to wrapped in a towel. Hold the Poor posture can put you at stop you from being active al- compression pack against the increased risk of back prob- together. Exercises which fo- painful part of your back. lems by putting extra strain cus on flexibility such as yoga Chronic back pain is often on your back. This can affect or tai-chi might be beneficial treated initially with pain kill- your muscles, ligaments, ten- - but check with your GP first. ers and exercise. You should dons and vertebrae and, in the These tips may also help re- speak to your GP regarding long term, can cause painful duce your discomfort: a suitable exercise plan. Your problems such as muscle, joint • Try to lose weight if you’re GP may also refer you to a and disc damage as well as overweight physiotherapist or, in certain constricted vessels and nerves. • Try not to make sudden cases, for surgery. Other op- Just being aware of how movements tions for treatment include you are sitting and standing • Wear flat shoes with cush- complementary therapies such can greatly improve your pos- ioned soles, as this can re- as osteopathy, acupuncture ture. You should stand upright duce the stress on your and chiropractic. MSA with your head facing forward back and your back straight. When sitting, make sure you are up- TREATMENT Our MSA Specialist Nurses right with your knees and hips There are two types of back are here to help: level and your feet flat on the pain; acute back pain which [email protected] floor or on a footstool. Don’t comes on suddenly and lasts Samantha Pavey (South hunch your shoulders or slump less than three months, and England and Wales): in your chair. When sitting chronic back pain which de- 020 3371 0003 down for long periods of time, velops slowly, lasts more than Katie Rigg (North be sure to keep your back well 12 weeks and causes long-term England, Scotland and supported using the back of problems. Ireland): 01434 381 932 your chair. Acute back pain can often

www.msatrust.org.uk | ISSUE 36, 2013 07 Harnessing knowledge THE TRUST’S LOCAL HUB

Head of Services, Neil Hunter, describes the Trust’s MSA Local Hub project, designed to harness community knowledge and to offer more support at a local level.

Multiple system atrophy is a oping an ‘MSA Local Hub’. people with MSA and their rare disease and the fact that The Trust’s MSA Local Hub carers. it is rare can sometimes have is a small website, or microsite, an isolating affect on the peo- attached to our main website WE NEED YOUR ple living with it. It is an im- that will be a portal to local HELP TO MAKE portant reason why the Trust information and support ser- THIS HAPPEN works hard to build peer sup- vices. You will be able to en- We can build the tool, but we port networks. Being in touch ter your postcode into a search need help to find the informa- with people who are having box and a list of services near tion. That is how we will really similar experiences can help to where you live will appear. capture the community feel to to reduce isolation, and can It will include contact details the Hub; the collective knowl- also provide an opportunity to and referral routes, if needed, edge that all our members, all share knowledge of local ser- for services that other mem- of you, have on local services is vices. bers of the Trust have found enormous. If you can help us The Trust’s growing network useful or beneficial. We hope build that knowledge into the of support groups achieves this ultimately to build it into a Hub, we will have information so well. The great benefit that comprehensive searchable da- to support so many people. comes from getting people to- tabase with all the information What we need is in two gether is that knowledge is in one place, making it easier parts: shared; this could be knowl- and quicker for people to find • The first thing we need is edge of helpful hints and tips the support they need. for you to let us know what about dealing with a specific The Hub will include vari- useful services you have used problem, or the sharing of a ous sections including one on or know about. It might be local service that someone has local primary care, one on re- day care at a local hospice, discovered. gional campaigning and, of a home visiting chiropodist We feel there’s a wealth of course, it will provide details or some hydrotherapy treat- local information just waiting of the Trust’s local support ment – anything that made to be shared amongst mem- groups. The aim is to develop a difference to you. We need bers, which is why we’re devel- an invaluable local resource for contact details, web ad-

08 ISSUE 36, 2013 | www.msatrust.org.uk dress, referral routes and any other information you feel is important to share. We have ARE YOU AN a form that you can fill in, so please contact us if you know of any service you would like to draw to the attention of others who may find it helpful. eBayer? • The second thing we need is Local Knowl- edge Volunteers to help us prepare the information for inclusion in the Hub. Their role will be to proof-read and check the informa- If you regularly sell on eBay™ you tion we receive, and to monitor it as service can now choose to donate some details change. We’re looking for a couple of of your profit to the Trust through volunteers for each county, so if you’re in- the eBay for charity scheme. terested and would like to know more, then please get in touch with me on 020 7940 4666 STEP ONE: or by emailing me at neil.hunter@msatrust. Once you’re ready org.uk. to sell your item, go The Trust’s MSA Local Hub is a really ex- to the Sell hub and citing development. It builds on everything select ‘Advanced the Trust stands for - greater understanding Sell’. As you’re filling of MSA, greater support for people affected by out the details, look out for the charity box just it and a community of people supporting each below where you set your price. other. Together we can build an incredible resource STEP TWO: to help everyone. MSA Select a charity to support and the percentage (10%-100%) of your final selling price that you’d like to donate. Note: The minimum donation is £1 per listing. STEP THREE: Three weeks after your item sells, PayPal Giving Fund (eBay’s partner charity) will automatically collect the donation from you. You can also manage your donations through the My Donations section of My eBay, under the My Account tab. Any fee credits will appear on your next invoice. GIFT AID Remember to add Gift Aid, as this means that for every pound you give the Trust will receive an extra 25p from the Government. Happy Selling!

If you’d like a “shout” on Facebook and Twitter, please email Ellie Taylor at: [email protected] with the link.

www.msatrust.org.uk | ISSUE 36, 2013 09 OLGA KORBUT JOINS THE FIGHT AGAINST MSA

A woman renowned throughout the world as the ‘mother of gymnastics’ has vowed to do all she can to help find a cure for MSA. Our new volunteer feature writer, Gavin Duncan, discovers what motivated Olga to join the Olga Korbut fight against MSA.

he four-time gold medal However, 2011 brought the nich Olympics in 1972. Twinning gymnast who won news of Nikolai’s untimely “After we both left Russia, the hearts of the world with death, aged 58. The man who it was hard to keep in touch, her poetic displays at the 1972 was revered in gymnastic cir- and we didn’t speak for years. and 1974 Olympic Games, cles for his strength and cour- When I heard of his passing, I found out about MSA for the age, had lost his fight against was shocked and I cried. My first time when her ‘beloved’ MSA. immediate reaction was to grab friend was struck down by the Olga recalls her friend, say- a bottle of water and I walked rare disease. ing, “As gymnasts we would for five miles at Tempe Town see each other often during Lake in Arizona in his honour. During the 1970s Olga trained, training. Nikolai was such a “Nikolai’s death made me travelled and competed in the wonderful person; when he think of the great times and company of Nikolai Andri- walked into the gym it lit up. laughs we had together. Tears anov. She became good friends He always made us smile and came to me. I remember only with the powerful athlete, who laugh. the happy times.” at one time held the record “We travelled a lot together Like Olga, Nikolai rode the for being the most decorated in the ‘70s and competed to- wave of the gymnastics boom Olympian of all time. gether for Russia at the Mu- in the 1970s. He too made his

10 ISSUE 36, 2013 | www.msatrust.org.uk name at the 1972 Games when Now 57 and living in the ing my help to MSA because I the world awoke to a new style USA, Olga remembers her think I can make a difference. of the discipline. friend, “Nikolai was such a great If a ‘Cold War’ can be broken, Today, he is quite rightly competitor, so strong. I was then so can anything else. still recognized as arguably shocked as I had never heard “The more people that the greatest gymnast that ever of MSA until he passed.” come together, the more we lived. He won a total of 15 Earlier this year, Olga sent can make a difference. Olympic medals for the Soviet her first rallying call to her “My Mom was a nurse dur- Union, including seven golds, fans around the world as she ing World War II. She was a which was a men’s record until joined the fight to find a cure giver and provider all of her Michael Phelps won his 16th for MSA, “Please spread this life. Today I live in her shad- medal at the Beijing games in message. Let’s make a differ- ow, and I think she would be 2008. proud of me. I think Andrianov grew up about her every day. I in poverty, but as a always give all that I teenager he was given can give, and I will do the chance of train- that for MSA. ing as a gymnast. He “I will give my grabbed that opportu- support to the fight nity with both hands, against MSA because and by the age of 18 it is what my heart was he was an important born to do. In 1972, member of the strong during my last routine Soviet national team. on the floor, I knew I As his reputation had won the hearts of grew, Nikolai was re- millions of people all nowned for possessing over the world. immense upper-body “God gave me a gift strength, for being a during that routine, I daring athlete who in- felt his warm hand, troduced new moves and delivered his mes- into his sport. He was sage all over the world seen by competitors - 40 years later, mil- as a formidable oppo- lions of people still re- nent. member that magical After retiring from moment. My message competitive gymnas- is peace and come to- tics, Nikolai went on Nikolai Andrianov gether to find a cure to train the Soviet na- for MSA.” MSA tional junior team. He was instrumental in bringing ence together.” to the fore the talent of Vitaly The woman once dubbed If you have any ideas on Scherbo, whose six gold medals the ‘Sparrow from Minsk’, also how to raise the profile of in the 1992 Barcelona Olympics donated a month’s proceeds MSA, please get in touch is the greatest performance at from online sales at her web- with Ellie Taylor at the any single Games. site to help the cause. Trust on 020 7940 4666 In 2001 he was inducted into Now she has vowed to help or by email at ellie.taylor@ the International Gymnastic raise awareness of the rare msatrust.org.uk. Federation’s Hall of Fame. neurological disease, “I am giv-

www.msatrust.org.uk | ISSUE 36, 2013 11 Easy to digest MEALS

In this issue of MSA News we’re featuring puddings in our tasty and easy to eat recipe section.

APPLE MOUSSE CHOCOLATE Cut & peel 4 large apples 1 lemon, juice and grated rind BLANCMANGE Half pint of thick cream 2-3 oz sugar 3 eggs Half oz gelatine 1 pint milk 2 heaped tbs cornflour Vanilla extract 1 tbs cocoa Cook the apples with the lemon rind and a little 2 tbs sugar water, then sieve into a basin. Melt the gelatine with a tablespoon of lemon juice (add some wa- Mix together the cocoa, cornflour and sugar with ter if necessary); leave to cool and when it starts a little of the milk to form a paste. Boil the rest to thicken, add to the apple. of the milk, add the mixture and cook until it thickens. Add the vanilla extract and stir. A ripe Whisk the eggs in a bowl over boiling water until banana, sliced thinly, can be added to the blanc- thick and creamy; cool, stirring all the time. Add mange. Serve with custard. to the apple mixture, sweeten to taste then fold into the cream. Pour into an 8-inch cake tin and leave to set, then turn out.

People with MSA will have different needs, and not all recipes featured in MSA News will be suitable for everybody, so please first check with your speech therapist and dietician. If you would like general information on food, diet or swallowing, please contact the Trust’s office on 020 7940 4666.

If you have your own favourite recipe you’d like to share, please email [email protected]. uk - thanks to the MND Assocation for letting us reproduce these recipes from their cookbook.

12 ISSUE 36, 2013 | www.msatrust.org.uk TRUST PLANS: SUPPORTING THE HEALTH AND CARE COMMUNITY

Over the past few months the Trust has been conducting a survey of health and care professionals to find out what they know of MSA, and their expectations of the Trust in supporting them.

early 250 responses have be looking to further develop over the next few months to Nbeen received, and of these this. re-vamp the professionals’ sec- 93.5% had heard of MSA. This Survey results also suggest- tion of the Trust’s website to was not surprising because the ed that health professionals include fact sheets for specific survey had been targeted at would find it beneficial to have professions, a new GP section professionals we already knew, downloadable learning materi- and a series of interviews with and we asked them to help als accessible from the Trust’s experienced health profession- spread the word about the sur- website, with 86% indicating als to guide those encountering vey. However, less than half so. MSA for the first time. of those who responded were Working with professional Not only has the survey registered with the Trust, and bodies was also a recommen- provided greater insight into almost a quarter of those who dation, with 71% of respon- the Trust’s role in guiding the replied had not heard of the dents indicating collaborative many health and care profes- Trust. working on the development sionals who support people Raising awareness of MSA of learning materials as a good with MSA, but it has also re- amongst the health and care idea. Again, this is something cruited a number of volunteers community is a priority for the the Trust will be developing from the medical community Trust, so the survey asked if over the coming months and, happy to help us develop the health professionals believed it as an example, work is already materials needed. Good news was up to charities to help ed- underway with the British all round! MSA ucate; the response was stag- Association of Occupational gering with 100% of respon- Therapists. If successful we dents saying they do believe it will try to develop similar ar- is the role of charities to help rangements with other organi- educate professionals regard- sations. ing a disease. The Trust’s two The survey also found that MSA Nurse Specialists already charity websites are the first deliver education and aware- place health professionals visit ness sessions to various groups when looking for information. of professionals, and we will There will be considerable work

www.msatrust.org.uk | ISSUE 36, 2013 13 MSA SUPPORT GROUP DIRECTORY

Local support groups are a great way to meet other people who understand life with MSA. Please contact Lyn Shaw at the Trust’s office on 020 7940 4666 or email at [email protected] for more details.

REGION VENUE DATE & TIME

Manchester Mayo Building, Salford Royal Hospital, M6 8HD Monday, 18 February - 1pm

Northumberland Blyth Library, Bridge Street, Blyth NE24 2DJ Wednesday, 27 February - 1.30pm

Devon Baptist Church, High Street, Cullompton EX15 1AA Friday, 1 March - 2pm

Shropshire The Lantern, Meadow Farm Drive, Shrewsbury SY1 4NG Monday, 4 March - 2.30pm

Surrey Shalford Village Hall, Kings Road, Shalford GU4 8JU Thursday, 7 March - 2pm

West Sussex Field Place, The Boulevard, Worthing BN13 1NP Tuesday, 12 March - 2pm

Yorkshire (East) Etton Village Hall, 37 Main Street, Beverley HU17 7PG Wednesday, 13 March - 1.30pm

Yorkshire (West/ Darley Village Memorial Hall, Sheepcote Lane, Harrogate HG3 Thursday, 14 March - 1.30pm North) 2RP

Oxfordshire Girl Guide Hall, Southern Road, Thame OX9 2EE Thursday, 14 March - 2pm

London (North) Southgate Hockey Centre, Snakes Lane, London EN4 0PS Monday, 18 March - 2pm

Dorset Heathlands Hotel, Grove Road, Bournemouth BH1 3AY Tuesday, 19 March - 12.30pm

Fife Burnside Hall, Balmullo KY16 0AW Wednesday, 20 March - 2pm

Inverurie The St Mary's Centre, St Mary's Place, Inverurie AB51 3NW Friday, 22 March - 1.30pm

Derbyshire Doveside Social Club, Hatton DE65 5DT Thursday, 28 March - 2pm

Warrington Fairfield and Howley Neighbourhood Project, WA1 3AJ Friday, 5 April - 2pm

Essex Great Tey Village Hall, Great Tey, Essex CO6 Monday, 8 April - 2pm

Norfolk/Suffolk Roydon Village Hall, High Road, Roydon IP22 5RB Monday, 8 April - 2pm

Armagh Venue TBC Tuesday, 9 April - 2.30pm

Limerick Classroom 1, Nurses Home, Midwestern Regional Hospital, Wednesday, 10 April - 2.30pm Dooradoyle

Longford The Civic Suite, The Temperance Hall, Longford Thursday, 11 April - 1.30pm

Southport St James Church Hall, Lulworth Road, Birkdale PR8 2BQ Thursday, 18 April - 2pm

Wiltshire St Paul's Church Hall, Malmesbury Road, Chippenham SN15 1PS Friday, 19 April - 2pm

14 ISSUE 36, 2013 | www.msatrust.org.uk East Midlands Holme Pierrepont Hall, Holme Pierrepont NG12 2LD Wednesday, 24 April - 2pm

Lincolnshire Alvingham Village Hall, Yarburgh Road LN11 0QG Thursday, 25 April - 1.30pm

Surrey Shalford Village Hall, Kings Road, Shalford GU4 8JU Thursday, 2 May - 2pm

Shropshire The Lantern, Meadow Farm Drive, Shrewsbury SY1 4NG Monday, 3 June - 1.30pm

West Sussex Field Place, The Boulevard, Worthing BN13 1NP Tuesday, 18 June - 2pm

Yorkshire (East) Etton Village Hall, 37 Main Street, Beverley HU17 7PG Wednesday, 19 June - 1.30pm

Yorkshire (West/ Darley Village Memorial Hall, Sheepcote Lane, Harrogate HG3 Thursday, 27 June - 1.30pm North) 2RP

Fife Burnside Hall, Balmullo KY16 0AW Wednesday, 3 July - 2pm

Devon Baptist Church, High Street, Cullompton EX15 1AA Friday, 5 July - 2pm

Inverurie The St Mary's Centre, St Mary's Place, Inverurie AB51 3NW Friday, 5 July - 1.30pm

Warrington Fairfield and Howley Neighbourhood Project, WA1 3AJ Friday, 5 July - 2pm

Cumbria Carlisle - venue TBC Monday, 8 July - TBC

London (North) Southgate Hockey Centre, Snakes Lane, London EN4 0PS Monday, 8 July - 2pm

Lincolnshire Alvingham Village Hall, Yarburgh Road LN11 0QG Thursday, 11 July - 1.30pm

Surrey Shalford Village Hall, Kings Road, Shalford GU4 8JU Thursday, 15 August - 2pm

Shropshire The Lantern, Meadow Farm Drive, Shrewsbury SY1 4NG Monday, 2 September - 1.30pm

West Sussex Field Place, The Boulevard, Worthing BN13 1NP Tuesday, 24 September - 2pm

Yorkshire (East) Etton Village Hall, 37 Main Street, Beverley HU17 7PG Wednesday, 9 October - 1.30pm

Yorkshire (West/ Darley Village Memorial Hall, Sheepcote Lane, Harrogate HG3 Thursday, 10 October - 1.30pm North) 2RP

East Midlands Holme Pierrepont Hall, Holme Pierrepont NG12 2LD Tuesday, 15 October - 2pm

Warrington Fairfield and Howley Neighbourhood Project, WA1 3AJ Friday, 23 October - 2pm

Lincolnshire Alvingham Village Hall, Yarburgh Road LN11 0QG Thursday, 31 October - 1.30pm

Essex Great Tey Village Hall, Great Tey, Essex CO6 TBC, October - 2pm

Devon Baptist Church, High Street, Cullompton EX15 1AA Friday, 1 November - 2pm

Cumbria Carlisle - venue TBC Monday, 4 November - TBC

Fife Burnside Hall, Balmullo KY16 0AW Wednesday, 6 November - 2pm

Inverurie The St Mary's Centre, St Mary's Place, Inverurie AB51 3NW Friday, 8 November - 1.30pm

London (North) Southgate Hockey Centre, Snakes Lane, London EN4 0PS Monday, 11 November - 2pm

Shropshire The Lantern, Meadow Farm Drive, Shrewsbury SY1 4NG Monday, 2 December - 1.30pm

Surrey Shalford Village Hall, Kings Road, Shalford GU4 8JU Thursday, 5 December - 2pm

Information for meetings in Cornwall, Kent and West Midlands will be available in the coming months.

If you’ve attended a support group, why not share your experience with others? Please email Robin Toomey at [email protected] or drop him a line at the Trust’s office: Southbank House, Black Prince Road, London, SE1 7SJ.

www.msatrust.org.uk | ISSUE 36, 2013 15 FUNDRAISING ROUND-UP

EVENTS athon... the list goes on! raised more than £2,000. Glob- Since the last edition of MSA This year sees a record- al service retailer, Daymon News, our brilliant fundrais- breaking number of people Worldwide, also showed great ers have been out in force tak- taking part in either organised Christmas spirit by making a ing part in a variety of gruel- events or their own, and to generous donation of £8,000 ling, tasty and fun events. To help our fundraisers we’ve re- to support our work. name just a few: Matt Handy cently launched our brand new We’ve also had a wonderful from Cornwall drove across ten supporter pack which provides response to our plea for com-

Roger & Amelia Smith Matt Handy took part in an completed the Great North Run intrepid trip across Europe Baking in aid of the Trust countries in ten days to raise fundraising advice and tips. panies to donate goodie bags both awareness and funds for So, if you’re setting up your to our marathon runners this the Trust; the Hughes family own event or taking part in an year, securing gifts from Uni- from Norfolk staged a spon- organised event such as a mar- lever, High5 sports nutrition, sored walk; Alice Herbison athon, 10k, cycle ride or swim, Maximuscle and Nike. from Edinburgh held a bake please download the pack from If your organisation sup- sale; the Old Owens football our website (www.msatrust. ports charities through fund- club in North London or- org.uk) and get in touch – raising activities, or if it has a ganised an MSA match; Jackie we’re here to help. Charity of the Year partnership Rough from Kent took part in you think the Trust might be a Santa Dash; Josh Vallis, resi- COMPANIES HELP eligible for, our Head of Fun- dent of Miami Beach, took part TOO! daising, Katie Heyward, would in the Miami Marathon. We’ve Christmas 2012 saw the Trust love to hear from you (katie. also had fundraisers taking expand its choice of Christmas [email protected] or part in the Great South Run, cards by offering our tradi- call on 020 7940 4666). the Great North Run, Preston tional format and, for the first Marathon, Wokingham Half time, our own e-card donated Marathon, Brighton Half Mar- by Wish-a-wish Cards, which

16 ISSUE 36, 2013 | www.msatrust.org.uk SUPPORT FROM the cause and a cure for this to plan ahead with confidence. CHARITABLE devastating disease. If you have chosen to remem- TRUSTS Here’s how your monthly ber the Trust in your Will, or Our thanks to the following gift can help: if you would like further infor- charitable trusts who have • £10 could supply detailed mation on how you can leave supported us in the past few information to 12 healthcare a lasting legacy to people af- months: teams per year, each caring fected by MSA, please get in • The Thoresby Charitable Trust for one person with MSA touch with Head of Fundrais- • The Constance Travis Char- • £20 could provide Trust ing, Katie Heyward. itable Trust welcome support packs to • The Family Rich Charities 36 families a year ONGOING APPEAL Trust We’re delighted to report that • Royal Naval Association REMEMBERING THE in 2012, with your support, we • Stonewall Park Charitable MSA TRUST raised over £400,000 which Trust In January of this year, we allows us to plough more • The Coutts Charitable Trust received a generous legacy of funds into research as well as • The Swire Charitable Trust £10,000 from Miss Leafe. Miss continuing to develop much • The Tadpole Trust Leafe was a member of the needed services for people af-

Team Pardoe abseiled down the Laura Hughes staged a Josh Vallis took part in the Trafford Centre sponsored walk Miami Marathon

REGULAR GIVING Trust and wished to support fected by MSA. As a growing Making a regular gift to the our work by remembering the organisation, we’ve also looked Trust is a great way of help- charity in her Will. We are ex- at our infrastructure, and now ing us to plan our future work tremely grateful for the oppor- have in place a structure which with confidence, knowing we tunity her bequest provides to will help us to meet ongoing can continue to support those continue our support and re- demands. We look forward to people affected by MSA in the search activities. keeping you posted on our de- UK and Ireland, while also Legacies of all values really velopments, and to updating funding research into finding are vital, and enable the Trust you with our progress. MSA

The fundraising team at the Trust are here to help: For enquiries about company support, regular giving, leaving a legacy or charitable trusts, please contact Katie Heyward, Head of Fundraising on 020 7940 4666 | [email protected]. For all enquiries regarding fundraising events, please contact Mike Coffey, Individual Giving & Events Fundraising Officer on 020 7940 4666 | [email protected].

www.msatrust.org.uk | ISSUE 36, 2013 17 BENEFIT CHANGES WHAT DO THEY MEAN FOR YOU?

In March of last year, the Government’s Welfare Reform Act received Royal Assent. The Act will produce the biggest change to the welfare system in over 60 years.

pearheading this change is dependence Payment (PIP). limit on the amount of benefit Sthe introduction of Univer- An assessment will be needed that most people between 16 sal Credit which offers support for PIP payments. It will pro- and 64 receive. The cap’s level for those in work on a low in- vide financial support for extra has been set at £500 a week come, as well as those out of costs caused by ill-health or for couples and single parents work. It will combine several disability. The payments are whose children live with them, existing benefits into one com- based around ‘need’ and to en- and £350 a week for single plete package. The benefits it sure the right level of support adults who don’t have children replaces include: Income Sup- is in place, need will be as- or whose children don’t live port, income-based Jobseek- sessed regularly. From 8 April with them. The cap will apply ers Allowance, income-based 2013, new claimants in the to the total amount that peo- Employment Support Allow- North West and North East of ple in your household receive ance, Housing Benefit, Child England will be put onto the from a range of benefits. Tax Credit and Working Tax PIP scheme. The rest of the The benefit cap does not Credit. It will be introduced UK will be included from June apply to all; you will not be af- in a few pathfinder areas in 2013. Existing DLA claimants fected by the cap if you qualify April 2013 with a wider launch will be moved over to PIP in for Working Tax Credit or any in October 2013. Entitlement 2015. However, any adjustment of the following: DLA, PIP is based on a number of crite- to existing DLA claims from (from April 2013), Attendance ria, but applicants must be be- October 2013 will prompt an Allowance, Industrial Injuries tween 18 and state pension age invitation to be moved over to Benefits or Employment and and be in Great Britain. More PIP. If you are already claim- Support Allowance. More in- information about Universal ing DLA you do not need to formation about the benefit Credit can be found at www. do anything, the Department cap can be found at www.gov. dwp.gov.uk/policy/welfare-re- for Works and Pensions will uk/benefit-cap. form/universal-credit. contact you in 2013. More in- The Trust has produced a Another key change under formation about PIP can be guide to benefits and support. the Welfare Reform Act will found at www.gov.uk/pip. If you would like a copy, please see the Disability Living Al- April 2013 will also see the contact us by calling Lyn Shaw lowance (DLA) stopped and launch of the much talked on 020 7940 4666 or emailing replaced with a Personal In- about benefit cap. This is a [email protected]. MSA

18 ISSUE 36, 2013 | www.msatrust.org.uk MSA CLINICS TRUST-FUNDED RESEARCH INTO UPDATE COGNITIVE Issue 35 of MSA News carried an ISSUES article on MSA clinics; there have been a few changes since the magazine was published: rust funded researcher Dr Kathryn Mc- TDonald will be joining Dr Christopher Ko- Southampton General Hospital in bylecki and Dr Alex Gerhard at the Universi- Hampshire and The Royal Gwent ty of Manchester’s neurology department this Hospital, Gwent April to start work on imaging studies aiming Clinics are not yet up-and-running. Further details to identify which areas of the brain cause prob- will be published as soon as they become avail- lems associated with MSA. Dr McDonald, who able. has assessment experience of people with par- kinsonian disorders, has recently held the post Plymouth of Senior Research Practitioner in the Depart- Apologies to Professor Zcyicek at the Derriford ment of Neurology at the Salford Royal NHS Hospital who does not run an MSA clinic. How- Foundation Trust. She has a PhD in Neurosci- ever, there is a six-monthly clinic in Plymouth at ence and is a Professional Member of the In- the Mount Gould Hospital run by the Trust’s MSA stitute of Clinical Research, UK as well as the Specialist Nurse, Samantha Pavey and Parkinson’s British Association for Cognitive Neuroscience. Specialist Nurse, Fiona Murphy. Telephone: 01752 268 011. In Memory

Gloria Pearce Bernard Dowd Robert Boyall Linda Michael Stanley Goldsmith Tony Salkeld Susan Tait Audrey Broughton Joan Prytherch William Brooks Ron Daniels James Grant Dianne Calladine Siven Doorghen Joe Peake Rose Mary Page Kathleen Parkin Doris Williams Jean McHale Julia Reay William (Bill) Cherrington Jack Conway Lorna Whitehead Sara Young Bill Ward Irene McIntosh Christine Cross David McCormick Patricia Woodman Michael Perry Margaret Sadler Maureen Collinge Alan Sackwild Michael Bromley Fred Darnell Rosemary Bamber Brian Royle Raksha Devi Pamela Wait Alistair (Ally) Connor George Graham Peter Moore Marian McArragher Evelyn Harman Stephen Booth Ronald Lummis Reen Pilkington Iskra Veneva-Kantchev Della Berryman Gordon Morgan Margaret Bridges Olive Augustine

www.msatrust.org.uk | ISSUE 36, 2013 19 MSA TRUST T-SHIRTS STAND OUT FROM THE CROWD!

Our t-shirts are a brilliant way of raising awareness. Whether you’re cheering on somebody fundraising for the Trust or popping down the shops, put on your MSA t-shirt and be noticed wherever you go!

If you wear one of our t-shirts out and about, please take a picture of yourself and send it to us. We’ll publish them on our website and social media, and together we can spread awareness of MSA. To order a t-shirt, please complete and return the form below. T-shirts cost £10 each, plus £1.75 P&P.

MULTIPLE SYSTEM ATROPHY TRUST T-SHIRT ORDER FORM:

Name:......

Address:......

Postcode:...... Telephone:......

Email address:......

T-shirts cost £10 each plus £1.75 for P&P.

Quantity required:...... Size(s): (S, M, L, XL)......

Total payment enclosed £......

Please make cheques payable to: Multiple System Atrophy Trust and send to: Multiple System Atrophy Trust, Southbank House, Black Prince Road, London, SE1 7SJ For more information contact Mike Coffey on 020 7940 4666 or email at [email protected].

We endeavour to ensure the accuracy of articles in MSA News. Please note, however, that personal views and opinions expressed are not necessarily endorsed by the Trust. Designed by Base Media 020 7840 0150. Printed by INQ Design 020 7737 5775.