From the OfficeWelcome to all our readers, both old and new. This edition is slightly different, in

that it has been prepared by the newly appointed Autonomic Liaison Nurse, LeePotiphar and Linda Campbell, SMT’s present administrator. The lead article is onproviding care, a subject close to the hearts of many SMT members.

There have been a few staff changes over the past year. In December 2007, LindaCampbell kindly took over the position of administrator at the SMT Office. Linda, aformer SMT Trustee, has provided invaluable support over the last 6 months, oftentaking messages from callers when Lee has been unavailable. Linda plans to step downonce a permanent administrator has been found. She will be sadly missed.

You may have had a call from Samantha Pavey. Samantha, an experienced specialistnurse, has been helping Lee with calls while he grows in his position as an AutonomicLiaison Nurse. Samantha and Lee will also be taking part in support and awareness daysover the coming months. With Lee and Samantha at SMT, the team is back to full strength.

Lee, who joined the SMT in January 2008, was a special needs teacher of childrenwith autism, before he decided to embark upon a career in healthcare. Graduating witha degree in nursing, he then worked as a Staff Nurse on a gastrointestinal unit. Leeconsiders that providing dedicated and personalised nursing care is an essential nursingfunction and that the role of Autonomic Liaison Nurse allows him the opportunity tochannel this passionately held feeling.

Diagnosis can be very distressing and significantly affect the every day life for thosediagnosed with Multiple System Atrophy (MSA), their family and carers. TheAutonomic Liaison Nurse’s role is to ease the burden of a MSA diagnoses by providingpersonalised care and support to individual patients, carers and family members. TheSMT Nurse will also assist primary care clinicians to gain a better understanding of howbest to help those diagnosed with MSA. Lee will add to the role by including a clinicalresearch component at Imperial College.

Catherine Best, the Autonomic Nurse Specialist, has left the Trust and is now basedfull-time at the National Hospital for Neurology and Neurosurgery. However, Lee willstill see Catherine, informally each Tuesday, at her clinic.

We are looking forward to putting together and publishing the next SMarT News.The Sarah Matheson Trust warmly welcomes any contributions that you are able to send(by the end of August for the next issue) and hopes that the contents of this edition willbe both helpful and informative. Lee, Samantha and Linda

SMarTContents

From the office 1

Supporting a carer’s 2needsBridget McCall looks at the variousaspects of the role of the carer andthe support available to them

Research news 5

Updates 6Catching up with projects relatedto SMT

News 7

Regional Support 8News from the groups inNottingham, Essex, Cornwall &Devon, and Yorkshire

Fundraising 10Find out what members havebeen doing to raise funds...

How to get involved 12

MSA

S

NewsNewsNews

The Sarah Matheson Trustprovides a support and

information service to peoplewith Multiple System Atrophy(MSA) and other autonomicdisorders, their families and

carers, health care professionalsand social care teams.

We also sponsor and supportresearch into MSA

The newsletter of the Sarah Matheson Trust

Issue 22 Spring 2008

SMT’s New Address!Please note, the SMT has a slightly altered address:

The Sarah Matheson TrustBox 200, St Mary’s Hospital, Praed Street

London, W2 1NY

The dedicated helpline numbers to use areLee: 020 7886 1520 or Samantha: 020 8150 6250

Feature

SMarT News – The newsletter of the Sarah Matheson Trust2

Providing care is a very individualexperience. The degree to which a

carer’s life is affected and the role thatincorporates will depend on manyfactors, including:• The particular health problems of the

person being cared for;• The type and extent of the help they

need;• The relationship between carer and

the cared for;• The carer’s own health and

circumstances;• The resources available, including

care support services.

Feelings about the term ‘carer’ can varyenormously. Some people say it is hardto identify with this term, because theyfeel the support provided becomes partof a complex relationship (parent,child, relative, partner or friend)between carer and cared for. Others say

Supporting a carer’s

that having a word to describe this rolecan help highlight the needs of carersand assist them to separate the task ofcaring from the myriad of variables thatmake up the relationship they have withthe person they care for. In recent years,carers have been provided with thepotential for a higher profile, via thedevelopment of Carers Acts. These Actsinclude:• The Carers (Recognition and

Services) Act 1995 – giving carersthe right to ask for their ownneeds to be included within anassessment;

• The Carer’s and Children’s Act 2000– enabling a carer to an assessmentin their own right, even if the personthey care for refuses to be assessed;

• The Carers (Equal Opportunities) Act2004 – promoting greateropportunities for carers inemployment, education and leisure.

In 1999, the UK government publishedCaring about Carers: a nationalstrategy for carers to acknowledge thevalue of carers in the community anddevelop information and supportservices for them. As a result, manystatutory bodies, such as primary caretrusts and social service departments,are developing services, centres andworkers specifically catering for carers’needs. The social services department,GP surgery or Citizens Advice Bureaushould be able to provide advice onwhat is available within a local area.

Acknowledging the importanceof a carer’s needsMany carers desperately want to carefor the person they support and, despitean array of challenges, find it a veryrewarding experience. However, caringcan also be viewed as extremelydifficult, especially where the carerfeels they have had little choice in thematter. Carers can often feel isolatedand struggle to make ends meet. Forsome, being a carer means caring whenthey are themselves over 60 or 70 yearsof age and may have their own healthneeds. Therefore, it is important toacknowledge the carer’s needs, as wellas those of the person being cared for.

Research carried out on thoseproviding care, including for illnessessuch as MSA, has identified several keypoints that are essential for a carer’swell-being. These include:• Information and education;• Access to services to help with care

(including financial benefits);• Ensuring the carer’s continued health

and well-being;• Having a say in the provision of

services provided;• Meeting others in a similar position.

There may not always be a definitivesolution to every issue a carer mightface. However, considerable informationand support can often be found ifsomeone knows where and how to lookfor it. How easy it is to access supportoften depends on what is available in

The term ‘carer’ is generally used to describe anyone who providespractical and emotional support to a partner, relative or friend requiringhelp because they are ill, aged or disabled. This feature looks at thevarious aspects of the role, and support available to carers.

“Caring can beviewed as

extremely difficult,especially where

the carer feels thatthey have had little

choice in thematter.”

Feature

SMarT News – The newsletter of the Sarah Matheson Trust 3

the local area and how effectivecommunication is between carer andthe health/social care professionals theyare in contact with. It is important tonote that provision can be variable.

A carer’s assessmentOne of the main ways carers can accessinformation on available support isthrough a carer’s assessment that theyare now entitled to as a result of theCarers Acts, described earlier. The localsocial service department is responsiblefor arranging support services forpeople who require help to liveindependently in the community,because of their age, illness ordisability. Social services must assessanyone who appears to fit thesecategories, thereby determining whatservices should be provided.

The services that might be availablewill largely depend upon the area wherethe person being cared for lives and caninclude support in the home to helpwith caring tasks or housework, daycare or respite care services (mentionedlater), equipment/ alterations to thehome or opportunities for socialcontacts and leisure. Assessments canbe determined by contacting localsocial services; the phone number willbe listed in the local telephone directoryunder ‘local authority’ or ‘GP surgery’.

Two examples of relevantvoluntary organisationsMany voluntary organisations,especially those helping people withspecific health conditions orcircumstances (including the SMT),have recognised the needs of carers andfamily members. These organisationsprovide services specifically for carers,and are often involved in campaigningand awareness raising activities

focused specifically on carer issues.Two dedicated voluntary

organisations in the UK that provide afocus on carers’ issues are: Carers UKand Princess Royal Trust for Carers.

Carers UK: In 1965, a voluntaryorganisation called Carers UK wasformed to provide carers with a voice tofight for the recognition and supportthat they require. It aims to:• Transform the understanding of

caring so that carers are free fromdiscrimination;

• Mobilise carers, decision-makers andthe public to bring about changesthat make a real difference to carers’lives;

• Inform carers of their rights and howto challenge injustice;

• Provide a free advice service –CarersLine ( 0808 808 7777);

• Production of a magazine Caring.

For further information, contact: Carers

UK, 20-25 Glasshouse Yard, LondonEC1A 4JT. Tel: 020 7490 8818 or viathe website: www.carersuk.org.

Princess Royal Trust for Carers: ThisTrust is the largest provider ofcomprehensive carer’s support servicesin the UK. Through its network of 118Carers’ Centres, the Trust providesinformation, advice and support to over180,000 carers. In general, the servicesoffered includes:• Information on any aspect of

caring• Publications – produced by the

Trust and other organisations• Carer’s courses• Research, development and

consultation

To find your local Carers Centre, seethe website (www.carers.org) orcontact their national office at142 Minories, London EC3N 1LB,tel: 020 7480 7788.

A nurse’s perspective on the impactof caringOver the past 3 months, I have taken part in an awareness day,support days and answered many calls at the SMT office. Thisexperience has proved to be invaluable in my understanding of MSA.One thing that particularly impressed me has been the enormousamount of care provided by carers. It was for this reason that I havedecided to dedicate this, my first newsletter, to all the carers whoprovide support to those with a diagnoses of MSA.

Interestingly, I recently read an article in the British Journal ofNursing (Taylor, 2008, vol. 17(4): 226-30) which describes the carer ofsomeone with a long term chronic illness as feeling that they cannever give, or do anything well enough. The article emphasised themanner in which a carer has to constantly juggle the every day basicsof life, prioritising the care they provide. With this in mind, we areprinting an article from Bridget McCall on caring, based upon herbook, The Complete Carer’s Guide. I hope you find the following,abridged article, informative.

Lee Potiphar – Autonomic Liaison Nurse

Please note: I am available to discuss anything regarding this or any other

article within SMarT News. My number is 020 7886 1520.

needs

services to meet local needs and mayinclude additional services such as carefor people who are terminally ill. Moreinformation is available from:Crossroads – Caring for Carers,10 Regent Place, Rugby, WarwickshireCV21 2PN. Tel: 0845 450 0350.The website is available at:www.crossroads.org.uk.

Examples of courses for carersSome carers may find taking a coursehelps them to understand more aboutcaring and what it involves. Tworelevant courses are provided by City &Guilds and The Expert PatientsProgramme.

Feature

SMarT News – The newsletter of the Sarah Matheson Trust4

The relevance of respite careHaving regular breaks, often calledrespite care, can help carers cope withcaring and give them the time torecharge their batteries. Respite carealso allows carers the opportunity topursue their own interests. Respite carecan take many forms, from a few hoursa week so they can have lunch withfriends to a longer break that will allowthe carer to go on holiday. The personcared for might have their care providedby somewhere outside the home such asa day centre or other respite carefacilities. The local social services,Carers UK and Princess Royal Trust forCarers are available to provide practicaladvice.

There is also a voluntaryorganisation dedicated to providingrespite care for carers, calledCrossroads – Caring for Carers. Thisscheme is available in most parts ofEngland and Wales, offers a range of

• City & Guilds are one of the UK’sleading providers of vocationalqualifications. They have developedan online learning resource forcarers, called Learning for Living,leading to a recognised qualification.More information is available via thewebsite: www.learning-for-living.co.uk;

• The Expert Patients Programme is thegovernment’s NHS-based traininginitiative. The course aims to helpcarers look after themselves. Moreinformation can be obtained fromtheir enquiry line: 0845 606 6040 orvia the website address:www.expertpatients.nhs.uk.

Some healthcare professionals may alsoprovide courses of relevance to carers.In particular, physiotherapistssometimes run courses on moving andhandling for those caring for peoplewho have physical disabilities.

“Why is respite carerelevant?

Because caring canbe exhausting!”

A Carer Checklist� Make sure you have all the information and services you require

� Get a ‘care assessment’ for you and the person you are caring for

� Arm yourself with self-management strategies

� Check what financial benefits you may be entitled to

� Accept your feelings and talk about what you are doing

� Be clear about what you are willing and unwilling to do

� Have contact with other carers for information, ideas and support

� Maintain your own health and set some time aside for yourself

� Try to avoid making caring the sole focus of your life

� Try to keep your sense of humour!

This précised article was basedupon the information

contained in The CompleteCarer’s Guide by BridgetMcCall, published in 2007(Sheldon Press, £7.99ISBN: 0 85969 995 1).

The SMT thanks Bridget forproviding this informative and

helpful article.

A recent Campaign for Carers by the PDS

The Spring issue of Parkinson’s News (2008, 30: 10) describes a focus group

study carried out by the Parkinson’s Disease Society (PDS). The study, which

was recently completed, provided a forum for carers to discuss their views

on a number of caring and care support issues. The initial findings are as

follows:

• A low awareness of entitlements to benefits and carer’s assessments

•Many carers not seeking support in the early stages of caring•Worries regarding eligibility criteria• Poor-quality respite care• Poor financial support for carers.This is a very interesting research study, of direct relevance to many

members of the SMT. Therefore, we will follow the study carefully to see

what the final results are. Please read further issues of SMarT News for

updates.

Research news

SMarT News – The newsletter of the Sarah Matheson Trust 5

One of the main objectives of theTrust is to improve the scientific

understanding of the disease processinvolved in MSA, by funding medicalresearch. Thanks to the wonderfulgenerosity of our donors we now haveconsiderable funds available to awardto researchers who apply for grants.

In January 2008, we were extremelypleased to start supporting a projectproposed by Professor Tamas Reveszand Dr Janice Holton at the QueenSquare Brain Bank for NeurologicalDisorders. The Queen Square BrainBank holds the brains of manyhundreds of people who have died ofneurodegenerative diseases, mostcommonly Parkinson’s Disease but alsomore than 100 brains of people whodied from MSA. Prof Revesz and DrHolton have had a long standinginterest in the neuropathology of MSAand have already published someimportant papers in this area.

Using money given by SMT and theMargaret Watson memorial fund, these

research workers intend to examine thebrain tissue further: the appearance ofbrain cells in MSA show unusualfeatures when seen down themicroscope, several of which reflect thefact that an abnormal protein, αsynuclein tends to form precipitateswhich stain as small dark particles,“glial cytoplasmic inclusions” (GCIs).The fact that the number of GCIs seemsto relate to the severity of brain celldeath indicates these may be animportant clue as to what has gonewrong. Professor Revesz and Dr Holtonsuspect that there may be otherabnormal proteins involved in theprocess and their research will focus on

a protein, p25α and its association incells with α synuclein.

We have just been able to advertisea second grant round and are delightedto report we have had a number ofexcellent applications proposing furtherfundamental scientific research. OurMedical Research Advisory Panel,chaired by Professor Clare Fowler, isnow considering the applications andwill then advise the Trust on how tomake best use of the money available.We hope to be in a position to respondto applicants, and to let you know theoutcome, following the next meeting ofthe SMT Trustees in June.

Darcy Hare, SMT Trustee

£60K grant to the Brain Bank

The National Service Frameworkfor Long-term Neurological

Conditions (NSF for LTNC) providesthe NHS with goals in the form ofquality requirements for services that, ifachieved, could substantially improvethe quality of life of individuals withneurological conditions and theircarers. The Department of ClinicalNeuroscience, Kings College, Londonis carrying out research to “definepalliative care needs of people with latestage Parkinson’s disease, MultipleSystem Atrophy and ProgressiveSupranuclear Palsy”.

The research sets out to understandthe experiences and needs of people

New research at Kings College, Londonseverely affected by MSA and otherneurological disorders. Identificationcan then be made of the most effectiveapproaches to enhancing quality of lifeand how to provide personalisedsupport through healthcare and socialservices.

Dr Tariq Saleem began the projectin June 2007. The research programmeconsists of two parts (quantitative andqualitative) which are designed tocomplement each other within alongitudinal study. Researchparticipants have been identified, withinterviewing continuing over a numberof months. Participants are beingfollowed up at four-monthly intervals.

Further details of the study canbe found at: http://www.kcl.ac.uk/palliative.

We will keep you informed on theprogress of, what appears to be, ahighly promising research project.

University of London

Updates

SMarT News – The newsletter of the Sarah Matheson Trust6

The NNIPPS (Neuroprotection andNatural History in Parkinson Plus

Syndromes) recruited 403 patients withMSA, alongside 763 patients withProgressive Supranuclear Palsy (PSP).Although many people do not like theterm ‘Parkinson’s Plus’, we used itbecause we wanted to recruit patients inwhom the diagnosis of MSA or PSPmight not yet be clear. We were keen tostudy MSA patients as early as possiblein the evolution of their disease

We were hoping that Riluzole woulddelay the progression of MSA and PSP.Sadly it did not but we have a clearresult which allows no doubt. NNIPPSused survival as the main measure ofthe effectiveness (or otherwise)

ofRiluzole, and there was no differencein survival at the end of three yearsbetween MSA patients who tookRiluzole compared to those who tookthe placebo (dummy).

What did we learn from NNIPPS?We learned a great deal about the natureof MSA and PSP. We developed a newclinical outcome measure (theParkinson’s Plus Scale) which can beused to measure changes in day-to-dayfunction over time. We also showedthat simple criteria for the diagnosis ofMSA can be used with high accuracy.

We acquired new insights into theclinical course of MSA. We also haveunique information from MRI scans

NNIPPS: Positive lessonsfrom a negative drug trial

In April 2007, I set up a petition on the10 Downing St. website to encourage

the UK Government to createawareness about the debilitating diseaseMultiple System Atrophy. Chris and Iwere delighted at the sudden flurry ofsignatures that appeared over therelatively short time after publishingdetails of the petition in SMarT News.We were keen to get at least 200signatures, because this guarantees thatthe petition will be looked at by theGovernment. I am very happy to saythat we finished with a total of 704signatures!

I set the petition up mainly to createan awareness of the illness in GPsurgeries and hospitals countrywide. I

Government petition update

collected over the course of the studyand on psychological changesexperienced by some patients. We havea wealth of information on the cost ofproviding care for people with MSA,and on quality of life of patients andcare-givers.

We also collected DNA samplesfrom most of our MSA patients. Wehave a unique tissue resource, throughbrain donation, for further research onthe basic mechanisms of the disease.We are currently working hard tofinalise all the analyses relating to thesedifferent aspects of the study and topublish them.

Finally, we have started newprojects using the DNA and braintissue. We intend that the NNIPPSresource will continue to generateexciting and important new research.We are inviting colleagues in the UKand abroad to use the NNIPPS resourceto advance understanding of MSA.

Professor Nigel Leigh,Kings College, London

already feel we have, at the very least,created awareness because of theresponse to the petition and those whowill now look at it. It is impossible totell from the signatures who has signedthe petition from reading about it in thenewsletter and who signed after

perusing the petition online. We hopethat all those who signed the petitionwill receive a positive response,sometime in the future.

It is the lack of knowledge aboutthis illness that has always struck me asone of the toughest hurdles that wehave to face. I think it is fair to say thatwe can ask anyone on the street aboutParkinson's and they would knowwhat we were talking about but withMSA, very few people have ever heardof it. I believe that creating awarenessis one of the most important things wecan do to help everyone who has beentouched by a degenerative neurologicaldisorder, such as MSA.

Thank you all so much from thebottom of my heart for supporting myefforts. If we have made even a fewmore people aware of MSA, then it hasall been worthwhile.

Karen Haigh

Calls have been received at the SMT office regarding what results were derived

from a MSA related drug trial. Professor Leigh (Kings College, London) describes

the results, so far, on how the drug trial might help those with MSA.

In the previous edition of SMarT News (issue 21) we ran an article on the

e-petition created by Chris and Karen Haigh. Here, Karen tells us of its progress.

News

SMarT News – The newsletter of the Sarah Matheson Trust 7

In September 2007, Roseanne Blazeof John Roan School contacted the

SMT office. She enquired aboutdevising a logo and other material forher Year 11 Graphic Designcoursework. Six months on, Roseannehas completed her coursework andvisited the SMT office with the results.

“For my GCSE Graphic Designcoursework, I was asked to createpromotional material for a charity. Ichose to design promotional materialfor the Sarah Matheson Trust”, saysRoseanne. “I chose the charity for tworeasons. Firstly, because they kindlyhelped my uncle who suffered fromMSA and sadly passed away 2 yearsago.

“Secondly, I know throughexperience that the Trust is only smallwhich means that very few peopleknow about them and what they do. Iwanted to create promotional materialsthat emphasised the SMT so that morepeople would know about MSA.”

We were all considerably impressed

Some time ago, Catherine Best initiated the concept of a‘Help Card’ for all those with MSA. With Catherine andPeter Padmore’s assistance (Peter already uses his ownhome-made card), the SMT has created a MSA Help Card.SMT’s gratitude goes out to both Catherine and Peter for

their support in producing the cards. We hope you find thecards useful.

If you are on our database as a person living with MSAyou will have found a Help Card included with thisnewsletter - if it was missing, please contact the office.

New MSA help cards available

School project highlightsSarah Matheson Trust

with the professionalism of Roseanne’sbadge, booklet, flyer, donation box andposter. Below is a picture of a proudRoseanne, displaying her coursework.

The SMT thanks Roseanne for allher hard work. Well done!

BadgesEnamel lapel badges are availablethat members can wear or sell toraise awareness. They comemounted on a card withinformation about MSA and theTrust.Contact theoffice formoreinformation.

Collection boxesFlat pack cardboard collectingboxes are available on request.Collections/donations howeversmall are always appreciated bySMT and help us to continue ourservices free of charge.

Regional Support

SMarT News – The newsletter of the Sarah Matheson Trust8

East MidlandsThe East Midlands Support Group hasbeen in existence for about 4 years andour area covers Nottinghamshire,Derbyshire, Leicestershire andLincolnshire. We also have twomembers from South Yorkshire. TheGroup meets twice a year at HolmePierrepont Hall (near Nottingham)which is my home as well as being anhistoric house our son runs as abusiness. We cater for weddingreceptions most weekends of the yearand therefore have adequate facilities tocope with people in wheelchairs.

Our Group has a spring meeting inearly April/May, with a furtherSeptember/October meeting. We meetfrom 2pm to about 4.30pm and cater fortea, cake and gossip. Our last meetingwas on 30th April, when we had a guestspeaker, the regional fund raiser for SueRyder Homes. It was interesting to hearhow Sue Ryder Homes can help peoplewith neurological conditions.

We have found that meeting andsharing problems in a relaxedatmosphere, such as a support group,can be most beneficial. If anyone in thisarea would like to join us, please

telephone Elizabeth Brackenbury on:0115 9333 083 or Ian Jones on: 01159199 294.

The annual Thoresby Walk will takeplace be on Sunday 14th September.Members can either be sponsored, or(on the day) make a donation to theevent. This is a fabulous walk, led byHugh Matheson, through the PrivatePark including the remains of theancient Sherwood Forest. Anyoneinterested please ring the office on: 0207886 1520 for further information.

Elizabeth Brackenbury,SMT Trustee

One question often asked at the SMT office is what local support groups there are for thoseliving with the impact of a MSA diagnosis. This question has arisen so frequently that it wasthought beneficial to provide ‘at a glance’ details of all five regional support groups. Furtherinformation can be found on the SMT web site (www.msaweb.co.uk) under ‘our services’.

Contact Point

Mrs Elizabeth BrackenburyTel: 0115 933 3083Or, Mr Ian JonesTel: 0115 919 9294i.jones5@ntlworld.com

Mrs Laurelie LaurieTel: 01206 210 410

Ms Karen WalkerTel: 077103 12552Or, 01274 861 947

Mrs Ann McLennanTel: 01704 568 353annandon@btinternet.com

Mr Peter PadmoreTel: 01822 870 642Zen70184@zen.co.uk

Region

East Midlands GroupMeets twice per year

Essex GroupMeets twice per year

Yorkshire GroupMeets twice per year

Lancashire & Merseyside GroupMeets 4 times per year

Devon & Cornwall GroupMeets 4 times per year

Address

Holme Pierrepont HallHolme PierrepontNottsNG12 2LD

The Old RectoryLittle Tey,Colchester, EssexCO6 1JA

In the first instance, pleasephone or email:karenwalker@BH-CC.co.uk

72 Lyton RoadHillside, SouthportPR8 3AP

9 Venn Hill,Milton Abbot,Tavistock, DevonP119 ONY

These support groups are run entirely by members of the SMT, for the benefit of those whose lives have beenimpacted by MSA. In the previous edition of SMarT News (issue 21, page 8), Laurelie and Bay Laurie (Essex GroupOrganisers) provided an excellent description of how to start up a support group. If you are interested in thepossibility of running your own local support group, the SMT would warmly welcome your enquires and assist inproviding relevant information and guidance on how to start one up.

Regional Support

SMarT News – The newsletter of the Sarah Matheson Trust 9

Devon & CornwallThe group hosted a very successfulAwareness Day near Plymouth lastAutumn with a large room full ofhealthcare professionals for CatherineBest’s excellent presentation, How MSArules our life. Peter Padmore gaveCatherine a well earned break with a tenminute talk on the disease with adynamic mix of questions, answers andgeneral discussion.

Since then, the group has held anumber of local meetings, but theattendance has been disappointingmainly because of the travellingdistances involved. As a result of this,our next meeting in May was devoted to

a discussion about alternative means fordiscussing our problems, notably theinternet. A live trial of one system willstart soon after the meeting in co-operation with the American‘SDS/MSA’ support group. Anyonewho is interested in exchangingmessages with other people with thedisease, or carers wanting to talk toother carers, please email me for thejoining instructions.

Our meeting was on 1st May in theTavistock area to talk about how we cancommunicate better without thetravelling. Then we are planning anormal meeting in mid September inthe Exeter area. For further details ofthese meetings, please phone (01822870642) or email me on:zen70184@zen.co.uk.

Peter Padmore

The regional support groups clearly play an important part in reducing the isolation felt by having an unusual disorder likeMSA. If you would like further details of any of the local groups or would be interested in setting up a group in your area

please contact the office. We can provide information, practical help and financial support to start new groups.

Lancashire and MerseysideThe second meeting of the Lancashireand Merseyside Support Group tookplace on 8th March 2008, in Southport.Twenty seven people came to drink teaand coffee, eat homemade cakes, talk,share problems (and solutions toproblems), relax for a while and smile!

It was lovely to see familiar faces,but very exciting and rewarding to meetnew people for the first time. At themoment, the group seems to be goingfrom strength to strength and hopefullythis will continue.

It is so evident that this is what hasbeen so desperately needed in this area

EssexWe met on 31st March in Great TeyVillage Hall on a beautiful sunny day.To make the meeting even better wewere able to welcome several newmembers to join the regulars with theadded bonus of the MSA SpecialistNurse Samantha, and Lee (SMT Nurse)coming from London to meet the group.

When everyone had arrived, 24 of ussat down to a good chat over lunch. Leeand Samantha went around the hall and‘table-hopped’. This enabled all themembers of the group an opportunity todiscuss any issues with them. Afterlunch they gave excellent presentationsand answered a number of writtenquestions which had been submittedbeforehand. We are so grateful to them

Smiles all round

Samantha and Lee’s presentation Tea and cake all round

of Britain - a place where patients,friends, family and carers can come andtalk. If you are able to, please come andjoin us at our next meeting on Thursday,12th June 2008.

Ann McLennan

The group relaxes, sits and chats

and hope they will come again.The time went all too fast but it

seemed that everyone left feeling that ithad been an informative and enjoyableget-together. We are looking forward tothe next meeting in October.

Bay and Laurelie Laurie

Note from Lee: This was my first timeat a support group. Bay and Laureliemade me feel very welcome, with goodfood and quite a few cups of coffee. Ireally enjoyed the day, and hope thateveryone got something worthwhile outof it. It left me with the feeling - this iswhy I became a nurse! I will definitelygo again. Samantha and I would like tooffer our thanks for a great day at GreatTey.

Fundraising

SMarT News – The newsletter of the Sarah Matheson Trust10

Cycle2cannesCycle2cannes is the brainchild of PeterMurray, a former Trustee of the SMT.Peter’s eldest brother, John, died fromMSA in 2000. Peter’s first cycle ride toraise funds for SMT was from Land’sEnd to John O’Groats. After that, heundertook a series of solo charity ridesand believed that a cycling event at thetime of the MIPIM Property Fair (theworld's premier real estate summit heldannually in Cannes) could tap into thegenerosity of the property industry andraise significant amounts for goodcauses. Cycle2cannes was registered inJanuary 2008 as a charity in its ownright and will continue to makecharitable grants.

The first ride in 2006 had just 17riders supported by a double decker buswith bunks. The weather was cold andat times the riders faced blizzardconditions. But all arrived safely,having enjoyed the experience of alifetime and raising £110,000. In 2007,there were 52 riders including themajority of those from the previousyear. This time there was a rolling roadclosure, riders stayed in hotels and theweather was rather milder, yet theexperience was just as exhilarating. Theride raised £270,000.

In 2008, there were 115 riders fromLondon and a further 15 fromBarcelona taking part in the 5-day

1500km cycling endurance eventsuitable for fit commuters as wellcyclosportive riders. The logistics ofmoving 130 riders and £200,000 ofbikes over the 5 days required 32support staff, 12 motorbike outriders, 3mechanics, C2C executive coacheswith luggage trailers, mechanic’s vans,2 lead cars and support vehicles, inexcess of a year’s preparation and thesupport and effort of hundreds ofpeople.

This year the British riders leftGreenwich on Thursday 6th March andon arriving at Folkestone caught theEuro Star to Calais, where they stayedovernight. They each rode a minimumof 100 miles a day in two sessions. Withthe rolling road closure they averaged aspeed of 15/17mph and arrived inCannes on Tuesday 11th March. Onarriving in Cannes and meeting up withriders from Barcelona, the group rodealong the Croisette before turning intothe forecourt of the Palais de Festivalwhere Peter Rhodes of MIPIMpresented all the riders with medals.

Later they changed out of their lycrainto their business suits to take part inthe Property Fair! Peter Murray andMike Evans, a current Trustee of theSMT, both took part this year. Mike’smother died from MSA. Since theinception cycle2cannes has assistedfour charities: Sarah Matheson Trust,LandAid, The Tom ap Rhys PryceMemorial Trust and Architects for Aid(A4A). This year cycle2cannes are alsosupporting the Duke of EdinburghAward Scheme.

So far cycle2cannes 2008 has raised£350,000 and Peter hopes the finalfigure will be some £400,000. Heanticipates that SMT will receive acheque for at least £40,000. This is afantastic effort and we are all verygrateful to cycle2cannes and all the

riders and their sponsors for their hardwork, energy, commitment and supportthat raised such an impressive sum ofmoney for SMT and the other charities.Geoffrey Murray andMichael Evans,

SMTTrustees

Scottish Madness NightOn 1st March 2008, the McLennanfamily held another night of ScottishMadness To remember Donald. The

venue was once again held inSouthport, the same band agreed to bethere, the buffet served was as good aslast year, and everyone wore tartan insome way or another. On the night, over£3,500 was raised for the SarahMatheson Trust.

From the moment the band started,people were dancing (or at least tryingto) and laughing at their attempts tomaster the Scottish reels. Friends andfamily travelled from all over thecountry to be there and the evening wasmade more special by the fact thatFraser (Donald's eleven-month-oldgrandson) joined the party for a while.From the feedback received it looks asthough it won't be too long beforeanother such evening is being planned!

Ann McLennan

Tall Ships RaceSince 1982, Malcolm Noble hadoperated as a volunteer and a Mate onvoyages aboard the Ocean Youth Clubfleet of sail training ketches. As a First

The trust is amazed, astounded and always appreciative of the effortsof our members and their families in fundraising. Here are some oftheir achievements.

A group of happy (and very fit) riders

arrive in Cannes; Peter Murray hands the

c2c baton to Peter Rhodes of MIPIM

Two happy tartan hat wearers...

SMarT News – The newsletter of the Sarah Matheson Trust 11

Fundraising

Mate, he had logged over 30 voyagesaboard the North East boat, JamesCook, a boat built as a training schemefor unemployed youngsters largelyfunded locally. In 1995, Malcolm wasgiven the chance to sail in the Tall ShipsRace to the Baltic visiting 14 changesof country in nine weeks, involving fivecrews covering 3,600 miles. Hesubsequently ran the office covering theNorth East of England for the OceanYouth Trust and continued to sail asFirst Mate, logging over 21,000 miles.

When Malcolm was diagnosed, about5 years ago, with Parkinson’s disease andsubsequently with MSA, it becamerapidly apparent that he was undergoingloss of muscle power and balance. Thisbecame obvious through dingy sailing,which became increasingly difficult. Hegave up the Commercial Endorsement tohis Yachtmaster Certificate whichincludes a Doctor’s examination and SeaSurvival Course. Malcolm was facing theprospect of never being able to sail again.

In 2005, the Tall Ships Race came toNewcastle and Gateshead and as part ofthe Education work around the event,Malcolm had taken a party of youngpeople to see Tenacious, the JubileeSailing Trust’s (JST) latest sail trainingvessel. JST promotes the integration ofmen and women of all physical abilitiestogether with able-bodied sailors,providing a buddy system for those whoneed specific support. TheMate of Tenacioussuggested that he shouldconsider joining one of theirtrips. And so, Malcolmsigned up to join the TallShips race in the Baltic tocelebrate his 60th birthday!

The race started inFinland, with planning howto get there initially proving difficult.However, solving this problem andanticipating further foreseeablechallenges, became part of the verypositive experiences of Malcolm’s trip.

Each person is assigned a carer or

‘Buddy’ throughout the voyage. Thecrew is 50% disabled and 50% able-bodied, and thus the Lord Nelsoncarries a large number (43) of

permanent crew. Manyexperiences ensued,including an opportunity togo up the mast. For thosewho were apprehensive, youcan have supervision whichMalcolm took advantage ofas he has a tendency to fallbackwards – not advisablehalf way up a mast!

The trip proved a fantasticopportunity to sail again when Malcolmthought that this was ‘all in the past’. Itwas good to experience the Baltic againas well as seeing the boat and harboursas a passenger rather than First Mate

with all its responsibilities. For moreinformation on JST, please visit:www.jst.org.uk Malcolm Noble

Card MakersIn the previous issue, we mentioned thatChristine Fowler, who has been hand-making cards for the Trust over the lastfew years, raised £400. This figure hasnow increased to over £2,000. Christinedoes not charge for the materialsinvolved or for making the cards and isgrateful to Julie, from Arrochar Flowersin Argyll, who sells the cards in her shopwithout taking any profit. Some of ourmembers may have seen Christine’scards on awareness days and know howprofessional, beautiful and unique theyare. We thank Christine and her husbandJohn, for their unfailing support.

Malcolm ‘learning the

ropes’

The 2008 London MarathonThe day proved to have a mixture of weather, with oneminute sunshine and the next pouring rain. However,conditions were better than the heat of last year! Four ofthe runners and their families and friends joined us forsome refreshment at The Warwick pub nearby afterwardsand the attached pictures show them grinning in triumphand relief.

We did have seven supporters lined up to run, butunfortunately two had to withdraw with injuries.However, Allan Comette, who was unable to run, didmanage to join us at our reception afterwards.

The times of our runners were as follows:

•Michael Gill 3:33:55 • Gina Grasso 5:42:08

• Andrew Ladd 4:21:11 • Mark Steel 3:46:46

• Andrew McCormick 4:27:58Andrew McCormick and Gina Grasso both ran carrying

injuries. So, well done for finishing! We will give you afurther update on their marvellous efforts in our nextSMarT News.

If people would like to run for the Trust in 2009, pleaselog onto the London Marathon website (www.london-marathon.co.uk) and apply for a place in the ballot. Wewould be grateful if you would let the office know later inthe year if you have been successful. We do have a smallamount of Golden Bond places which can be sharedbetween some of the unsuccessful applicants, though wecannot guarantee a place for everyone.

A big thank you goes to all our runners who have yetagain raised funds for the Trust.

Linda Campbell – SMT Administrator

Michael Gill

Andrew McCormick

Andrew Ladd

Mark Steel

12

MSA

Sarah Matheson Trust forMultiple System Atrophy

Information, Support, Education andResearch in Multiple System Atrophyand other autonomic disorders.

Providing services to people with MSA,families, carers and professionals.

� Information leaflets and newsletters� Specialist nurses� Telephone advice line� Regional support meetings� Training and education sessions� MSA research� Communication Aid Loans� Welfare Gift Scheme

Patrons:Sir Roger Bannister CBE FRCPProfessor CJ Mathias DPhil DSc FRCP

Trustees:Nicolas BuntMrs Robin BrackenburyMichael EvansValentine FlemingMs Darcy HareAlexander LoehnisGeoffrey MurrayEileen Lady Strathnaver OBELady Harriot Tennant

All correspondence andenquiries to:Sarah Matheson TrustBox 200St Mary’s HospitalPraed StreetLondon W2 1NY020 7886 1520020 7886 1540 (fax)

www.msaweb.co.uk

The Trust is financed entirely byvoluntary donations.

Registered Charity Number 1062308

Designed,laidoutandprintedbyINQDesign.CallMartinon0208688

8773

Current MSA members 821Other patient members 41Relatives and carers 407Professionals 1495Others 155

Membership Numbersas of April 2008

In Memory for 2008This edition of SMarT News will cover the period from January 2008. If you haveinformed the SMT of a loved one’s death and he or she does not appear below,please accept our apologies (we can always rectify this in a later edition).

� Janette Armstrong� Angela Barton-Smith� David Blair� Henry Boyd� Andrea Breen� Maureen Burt� Aubrey Cahill� Pamela Cole

� Ruth Curtis� James Davies� John Duncan� Ray Edwards� Margaret Grace� Michael Harden� Terry Jackson� Morag Mackle

� Brian McCormick� John Moir� Sally Pollock� Lewis Roper� Francis Sharp� Charles Simons� Valerie Spacie� Robert Turner

• Become a regular donorDonations by monthly or annual direct debit. Regardless of size, all donationshelp us maintain and improve upon our services. Don’t forget to Gift Aid (seebelow) any donations to increase the value of the donation generously given.• Become a fundraiserEvents such as coffee mornings, car boot sales and a wide variety of sponsorshipopportunities bring the SMT valuable income every year. New ideas are alwayswelcome.• Use our online fundraising/donation facilityWe have the facility for you to use an online fundraising package on:www.justgiving.com. This facility can be used for anything from a personal occasionto the dedication of a person’s life.• Contribute to SMarT News

Sharing your experiences and tips with other members helps keep it your newsletter.• Form a local SMT group

Link with the SMT office and independently run a group to provide local groupsupport.• Raise awareness about MSA

Share our information with family, friends and the health professionals you meet.Don’t forget: the SMT is your charity.

Gift Aid It!Did you know that if you are a UK tax payer, we can increase the value of anydonations made to the SMT by 28% This Gift Aid could raise the SMT’s income byas much as £20,000 extra per year. We have Gift Aid forms available at the SMT office.

All articles aim to provide as much information as possible. However, sincesome information involves personal judgement, its publication does not mean

the Sarah Matheson Trust necessarily endorses them

Ways to support the SMTand help the Trust grow

MSA and travel insurance – next issueOne of the many enquires that come into the SMT office is on how to get travel

insurance cover for MSA. The SMT Nurse is, at present, gaining a greaterunderstanding of the insurance situation. A table of insurance companies

providing MSA cover will be published in the next edition of SMarT News. Pleasecontact Lee to discuss either good or bad experiences that you have encountered.

The next edition (issue 23) is planned for posting to you by the middle of October2008. If applicable, please provide articles by the end of August. All articlesreceived after this date will appear in the following edition (issue 24).