YSTEM S AT LE R P O I P T L H Y U M T R | U E S N T I Z M A E G M A B M E R P I S H 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.