MSA News (issue 26)

From the TrusteesWe are delighted to be able to announce the appointment of our new Executive

Director, Nickie Roberts. She started with us in September on a three-day-a-week basis and brings with her extensive experience of working with and ‘growing’small medical charities. This is a very exciting and positive move forward for theTrust and, together with Linda Campbell, our Administrator, and Samantha Pavey, ourSpecialist Nurse, we are confident that we now have in place a team which will enableus over time to extend the services we offer to our members.

With Nickie joining us, and the need for more space in the future, we felt this wasalso the right time to move our office out of St Mary’s Hospital in Paddington. We areextraordinarily grateful to St Mary’s and Imperial College Healthcare NHS Trust fortheir generosity in providing us with office accommodation for the last 12 years. TheTrust now has its own friendly and affordable space in Southbank House, Black PrinceRoad, Vauxhall – just across the Thames from Westminster in London. We are printingin this issue the full details of our new postal address, telephone and fax numbers, ande-mail. Please see the box below. Our website remains the same.

So, it’s a lot of change for the Trust – and change is always challenging. But webelieve it is also going to be very rewarding and we are greatly looking forward to aperiod of innovation and growth and to improving the support and services we offer toyou, our members. After all, that is what the Trust is all about.

Eileen Strathnaver, Chair of Trustees

SMarTContents

From the Trustees 1

Hot topics 2Samantha Pavey addressesrequests for information onfour major topics

News 5Update on some of the servicesavailable from the office

Research update 6Requests for volunteers andupdates on how SMT grantsare being used

Regional support 10News from the regions

Fundraising 12Fancy dress parties, car bootsales, abseiling... see whatmembers have been doing toraise funds

Christmas cards 15Order form for thisyear’s cards

How to get involved 16

NewsNewsNews

Sarah Matheson Trust providesa support and information

service to people with MultipleSystem Atrophy (MSA),their families and carers,

healthcare professionals andsocial care teams.

We also sponsor and supportresearch into MSA.

The newsletter of the Sarah Matheson Trust

Issue 26 Autumn 2009

SMT is moving officesAs from 1st November 2009

the SMT office contact details are:

Sarah Matheson TrustSouthbank House, Black Prince Road,

London SE1 7SJ

Tel: 020 7940 4666 Fax: 020 7940 4664

Email: [email protected]

Samantha Pavey (Specialist Nurse)020 3371 0003

[email protected]

Linda Campbell (Administrator)020 7940 4666

[email protected]

Advice

SMarT News – The newsletter of the Sarah Matheson Trust2

Advance care planning meanslooking ahead at possible future

options for health care, particularly atthe end of life and expressingpreferences. Thinking about end of lifeissues can feel uncomfortable orupsetting and it is important that youare able to have the time to discuss yourfeelings with family and/or carers; itmay help to have the support ofhealthcare professionals in clarifyingyour thoughts and making decisions.

Unfortunately for people living withMSA, as the disease progresses, speechcan deteriorate and it becomes moredifficult to express wishes regardingcare. It is a good idea, therefore, todiscuss these issues earlier rather thanlater so that you can make your wishesknown and ensure they are documented.Individual choice is paramount. It isextremely difficult for families to act asan advocate for the person living withMSA, if they do not know what yourpreferences are, and planning ahead cangive peace of mind that your wishes willbe taken into account.

Hot topics

Advance Care Planning

– your queries answered

In recent months the Trust has received a number of requests forinformation relating to specific topics. In this issue Samanthaanswers queries on four of these: advanced care planning;coenzyme Q10; services available to those living with MSA; and stem cells.

Advance Statements andAdvanced DirectivesThere are two means of makingadvance plans about medical care andtreatment. These help to safeguard yourchoice in treatment decisions byrecording your views and values, andcan guide families and/or healthcareprofessionals acting for people who areunable to make decisions forthemselves. There are two types ofdocuments: Advance Statements andAdvance Directives.

An Advance Statement is a generalstatement of your wishes and views. Itis not legally binding but will assistmedical staff to determine the besttreatment for you. It may take one ofthe following forms:• a signed document or card• a witnessed oral statement• a note of a discussion recorded in a

patient’s medical file.An Advance Directive allows you torecord your wish to refuse certain typesof life-prolonging medical treatment. InEngland and Wales, such statements

can have legal force and are sometimesknown as ‘Advance Decisions’. Topicsyou might like to consider are:resuscitation, treatment with antibioticsfor pneumonia, admission to hospitaland artificial feeding. For example, aperson may decide that they wish torefuse resuscitation, if their illnessbecomes such that they can no longermake their wishes known.

For an Advance Directive to beenforced when required, healthprofessionals must be convinced thatthe person had capacity (was mentallycompetent) to make the directive andhad accurately predicted their currentsituation. (See the notes at the end ofthis article relating to mental capacity.)

It is essential to find out abouttreatment options before drawing up anAdvance Directive, so it may beadvisable to discuss your intentionswith a medical professional such asyour GP, who can help you understandthe consequences of different options.They can also help you to express yourwishes clearly and confirm you werecompetent at the time you prepared andsigned the document.

To make your Advance Directiveyou can either consult a solicitor, ordownload a form from one of themany website sources, but pleaseensure you are using a reputablecompany/organisation. The Alzheimer’sSociety website includes a form

Samantha Pavey

Please note, the telephone number for Samantha Pavey (Specialist Nurse)has changed but her email address remains the same.

Her contact details are:

Samantha Pavey (Specialist Nurse) 020 3371 0003

Email: [email protected]

Advice

SMarT News – The newsletter of the Sarah Matheson Trust 3

(alzheimers.org.uk/advancedecisionform)The Advance Directive must bewitnessed and you should give a copyto your GP, your lawyer and a closefamily member or friend. You canchange your mind at any time, destroythe original Advanced Directive andmake a new one. You must givecopies of the new Advanced Directiveto the people who previously receiveda copy.

Life-prolonging treatmentsThese include resuscitation, artificialfeeding and hydration (administered bya tube which enters the body),ventilation (breathing by a machine)and intravenous medicine (by drip orinjection).

Basic careThis includes nursing care, pain reliefand relief of other symptoms, and theoffer of food or drink by mouth.

The code of practice produced bythe British Medical Association statesthat patients can refuse life-prolongingmedical treatment but they cannotrefuse basic care.

Planning for Choice in End-of-lifeCareCurrently in the UK it is recognised thatwhere death is inevitable, life-prolonging treatments such asresuscitation, artificial ventilation, orartificial feeding may be withdrawn orwithheld. In such cases the goal ofmedicine becomes the relief ofsymptoms. ‘Basic care’ and comfortmust be provided and can never bewithheld. Removing life-prolongingtreatments is not euthanasia.

social and spiritual. The hospice orpalliative care team are used todiscussing end of life issues, so areanother handy point of contact whenconsidering advance care planning.

Palliative CareOne issue which should be discussed ispalliative care. The philosophy behindpalliative care is that people who arefacing a serious illness should be ableto expect privacy, dignity, a highstandard of care in comfortablesurroundings, adequate pain relief andappropriate support in keeping withtheir preferences.

Palliative care improves the qualityof life of individuals (and theirfamilies) facing the problemsassociated with life-threatening illness,through the prevention and reliefof suffering by means of earlyidentification and impeccableassessment and treatment of painand other problems – physical, psycho-

Anecdotal evidence and limited research findings indicate that CoenzymeQ10 may be of benefit to patients with neurological illnesses.

Coenzyme Q10 (CoQ10), also known as Ubiquinone, can best bedescribed as a herbal supplement. It appears to work on the mitochondria ofthe cell (imagine the mitochondria as the battery of each cell) and thereforemay help with energy levels.

CoQ10 was first isolated in 1957 by Dr Crane in Wisconsin and byProfessor Morton in England. The role of CoQ10 in the energy productionwithin mitochondria was better understood after the contribution of 1978Nobel Prize winning scientist Peter Mitchell.

A lot of research has been carried out with interesting results. Changes inlevels of CoQ10 in the cerebrospinal fluid of patients with Parkinson'sdisease have been found, but the clinical significance is unclear. There aresome interesting reports suggesting possible therapeutic benefit of CoQ10 inHuntingdon's disease (HD). The suggestion is that the mitochondrialdysfunction found in HD may be improved with CoQ10 supplements. It hasalso been tried with apparent benefit in Friedreich's Ataxia. It isrecommended in migraine prophylaxis.

CoQ10 may also have a role as an antioxidant and it undoubtedly hasantioxidant activity.

There is insufficient data available to give a ‘recommended' dose. Somepatients taking doses varying between 100 and 600mg Coenzyme Q10 perday have reported improvements in their general well-being. Some peopleliving with MSA have reported that they feel less tired during the day and asa consequence are sleeping better at night. There are no reported sideeffects from taking CoQ10 at this time. The longer-term effects of CoQ10and whether it exerts any disease modifying or neuroprotective effects andat what doses and at what stage(s) in the disease are as yet unknown.Further research is required to provide the answers to these and otherquestions concerning the use of CoQ10 in the treatment of MSA.

Please note a possible interaction with some anticoagulants (bloodthinning medication) has been reported at high doses.

Please speak to your GP if you are considering taking CoQ10.

Coenzyme Q10 – the basics

“Basic care and

comfort must beprovided and can

never be withheld.”

The Mental Capacity Act 2005 cameinto force during 2007 and applies toEngland and Wales. Scotland hasseparate legislation under the Adultswith Incapacity (Scotland) Act 2001.In Northern Ireland, mental capacityissues are dealt with under commonlaw. For a summary of the MentalCapacity Act see www.dh.gov.uk/PublicationsAndStatistics/BulletinsOther helpful websites arewww.direct.gov.uk,www.alzheimers.org.uk andwww.ageconcern.org.uk

Advice


When living with MSA you mayneed a range of services to help

support you. The National ServiceFramework (NSF) for Long TermConditions states that people with suchconditions are to be offered integratedassessment and planning of their healthand social care needs. Many of theseservices will help maintain and improveyour quality of life. It is thereforeimportant for you to know how toaccess to them.

National Health ServicesThe NHS has Primary Care Trusts andNHS Trusts. Your Primary Care Trust isresponsible for your general practitioner

(GP) and other staff, such as communitynurses, operating from your GP’spractice or health centre. Primary CareTrusts also run community rehabilitationservices using physiotherapists,occupational therapists, and speech andlanguage therapists. These therapistsshould review you regularly and, onceyou are under their care, you can contactthem directly for follow-up advice orreassessment. Most therapists prefer tosee you as early as possible after yourdiagnosis so they can offer appropriateadvice about keeping yourself well.

The GP is seen as the gatekeeper foryour care. You can access all of theservices mentioned here via your GP.

The NSF places emphasis on promptaccess to specialist neurological expertise(as close to home as possible) for aperson with a neurological condition. Aswell as primary care services, your NHSTrust will be linked to a number ofPrimary Care Trusts and also provideshospital-based services, including

Services available to those living with MSA

Stem cells are a class of undifferentiated cells that can beinduced to differentiate into specialised cell types.Commonly, stem cells come from two main sources: Adultstem calls and embryonic stem cells.

Adult stem cellsAdult stem cells have been found in tissues such as thebrain, bone marrow, blood, blood vessels, skeletalmuscles, skin, and the liver.

Embryonic stem cellsEmbryonic stem cells are derived from a four- or five-day-old human embryo, usually extras that have been createdin IVF (in vitro fertilisation) clinics where several eggs arefertilised in a test tube, but only one is implanted into awoman.

Research with stem cellsScientists and researchers are interested in stem cells forseveral reasons. Although stem cells do not serve anyone function, many have the capacity to serve anyfunction after they are instructed to specialise. Everycell in the body, for example, is derived from the firstfew stem cells formed in the early stages ofembryological development. Therefore, stem cellsextracted from embryos can be induced to become anydesired cell type. This property makes stem cellspowerful enough to regenerate damaged tissue underthe right conditions.

Brain disease treatmentAdditionally, replacement cells and tissues may be used

to treat brain disease such asParkinson's and Alzheimer'sby replenishing damagedtissue, bringing back thespecialised brain cells thatkeep un-needed musclesfrom moving. Embryonicstem cells have recently beendirected to differentiate intothese types of cells, and sotreatments are promising.

This potential has givenstem cell research a highprofile and is leading to significant interest andinvestment in academic, medical and commercialresearch throughout the world.

Recent scientific advances have opened up thepossibility of treating a much wider range of disordersby isolating and growing stem cells in the laboratory. Insome cases it may be possible to administer stem cellsdirectly to an individual in such a way that they wouldmigrate to the correct site in the body anddifferentiate into the desired cell type in response tonormal body signals. However, currently it seems morelikely that stem cells will be grown and induced todifferentiate into a defined cell type in the laboratoryprior to implantation. In the longer term it may also bepossible to induce stem cells to differentiate intoseveral cell types, generating whole tissues, prior toimplantation. For these approaches a much greaterunderstanding of differentiation and developmental‘signals’ will be required.

Stem cells – the basics

“The NSF places

emphasis on promptaccess to specialist

neurological

expertise.”

SMT news


SMT has the following informationleaflets, which are available from

the office.• Continence in MSA and other

autonomic disorders• Going into Hospital• Holidays and Travel Insurance• Living with Postural Hypotension• Managing constipation in MSA and

other autonomic disorders• PEG feeding• Saliva control• Someone in my family has been

diagnosed with MSAThere are also leaflets especially forchildren which, ideally, should be readas a package, but do ask for individualleaflets you think would be helpful.• What is MSA

• What children understand aboutdisability

• Gadgets – understanding disabilityfor children

• Helping children with their griefIn addition we have someleaflets specifically for healthcareprofessionals, which are available onrequest from Linda at the new officeaddress and telephone number.

If anybody feels that there is a needfor a leaflet we do not have, pleasecontact Linda with your ideas.

We would like to take thisopportunity to thank INQ Design fortheir support for the Trust andparticularly their kind donation of aprint-run of 1,000 copies of the revisedGadgets leaflet.

outpatient services. It is responsible foryour local district hospital, neurologycentre, neuro rehabilitation unit andneurosurgery centre.

Most neurologists will only be ableto see you every 6 months. If you alsoaccess the services of your localParkinsons Disease Nurse Specialist(PDNS) every 6 months and alternateyour appointments you can be seen by aspecialist every 3 months. The PDNSalso looks after people living with MSAand is a good source of support andknowledge. The PDNS will know whatservices you can access locally. Youcan also liase with Samantha Pavey,SMT’s Specialist Nurse.

Social ServicesSocial services can provide:• Help with personal care such as

washing and dressing• Meals on wheels• Laundry services• Equipment and aids to use in your

home• Free or subsidised travel on public

transport.You may have to meet certain criteria tobe eligible for these services and youmay have to pay for some of them. Acommunity care assessment isundertaken by a social worker/caremanager to find out your needs.

After your assessment your socialworker/care manager will draw up acopy of a care plan, which summarisesthe services to be provided. You will begiven a copy of this and it should bereviewed by social services every year.In some areas you may be under thecare of a social worker from a specialistsocial services disability team.

The National Service Frameworkfor Long Term Conditions focuses onthe needs of people with neurologicalconditions calling for joint workingacross all agencies, including providersof transport, housing, employment,education, benefits and pensions, tosupport people to live independently.

Leaflet update

The last SMarT News advisedmembers that the Trust loans

lightwriters on the recommendation oftheir Speech and Language Therapist(S&LT). We now also have available forloan some EchoVoice machines, which

are amplifiers. If you think the loan of anEchoVoice machine might help you,please contact your S&LT who must senda letter of recommendation to Linda at theoffice. Don’t forget to give your S&LTour new office address!

EchoVoice machines available

The summer issue of SMarT News included a Holiday Directory as the mainfeature article. Vitalise was one of the organisations featured in the article.It was nice to receive feedback from David Waterman and Sheila Lucas ofHerne Hill who holidayed with Vitalise at one of their five centres. Thissummer they went to Netley near Southampton. David has MSA and Sheilais his full-time carer and she wrote to SMarT News to say they had a reallygood holiday and the impressive thing about the centre was the peoplewho work there (who are on duty 24 hours a day) and the volunteers whowill help with practically anything you ask for. The centre is very wellequipped, trips out and evening entertainment are organised and threegood meals a day are included. Sheila added that the costs are not low buttheir stay was well worth the money and in many cases Social Services willcontribute. It’s pleasing to know that our holiday directory has been ofhelp and hope other readers have also found it useful.

This is a new column that we hope to include in every issue of SMarT Newswhere readers can share tips and recommendations for making the caring ofa loved one with MSA a little easier. It may be very simple such as plasticbags on car seats to aid turning to get in and out, or a successful holidaylocation. Please keep your contibutions to not more than 100 words andsend them to Linda at our new office address.

Sharing the caring

Research


The award in 2008 of a one-yeargrant from the Sarah Matheson

Trust enabled researchers at the QueenSquare Brain Bank for NeurologicalDisorders (QSBB) to continue aprogramme of research into multiplesystem atrophy (MSA). The researchutilises the considerable resource ofbrain tissue that has been generouslydonated to the QSBB by people whohave died from MSA. The project wasdesigned to further our understandingof the mechanism by which α-synuclein undergoes abnormal fibrilformation and accumulates inoligodendrocytes to form glialcytoplasmic inclusions (GCIs) in

MSA. This is important because wehave previously shown that thenumber of GCIs increases with theduration of disease and that increasingnumbers of GCIs correlate with thedegree of nerve cell loss.

The aim of this project had been toexplore the role of several proteinsthat may play an important part in theformation of GCIs in MSA. Theproteins chosen for study wereLRRK2, parkin and parkin co-regulated gene (PACRG). These arethought to be important in thedevelopment of Parkinson’s disease(PD) which has some similarities withMSA as in both diseases α-synuclein

accumulation is a key feature. We alsowished to explore the role ofastrocytic pathology in MSA. This is aneglected area although we know thatastrocytic abnormalities are afundamental part of the pathology ofother parkinsonian diseases and ourprevious work had demonstrated thatthe astroglial response in MSAfollows a similar pattern to that ofGCI load. The award of this grantalso enabled us to participate inprojects aiming to establish the role ofgenetic factors in MSA; such projectsoften require the contribution ofseveral centres.

In our study we showed that parkinis a component of some GCIs whileLRRK2 can be identified in themajority of these glial inclusions andis also associated with degradedmyelin sheaths which are thought tobe an early pathological change inMSA. This may be important becauseLRRK2 is an enzyme that is able toadd phosphate groups to proteins,possibly including α-synuclein, andphosphorylation of α-synucleinpromotes the formation of abnormalinsoluble fibrils of the typeaccumulating in GCIs. The questionof whether astrocytes in MSA showincreased expression of proteinsimplicated in the development of PDsuch as α-synuclein, parkin andPACRG had not been previouslyexplored. Our results show thatreactive astrocytosis in MSA is mostsevere in the pons (a region of thebrain) and that increased GCI load in

One of the main objectives of the Trust is to improve the scientificunderstanding of MSA by funding medical research. I am delighted thatthis issue of SMarT News includes an article by Dr Janice Holton andProfessor Tamas Revesz on the results of a one-year research project,funded by the Trust, which they carried out in 2008. This is an excellentexample of the important work that we are able to fund thanks to thewonderful generosity of our donors.

I am also very happy to report that we have been able to advertise againrecently, inviting applications for a further research project grant. This is inaddition to the two three-year projects which we are currently funding –one by Dr Henry Houlden and one by Dr Holton and Professor Reveszwhich builds on their earlier work funded by the Trust. Our ResearchAdvisory Panel will review the applications that we receive for the latestgrant and advise us on how to respond. We will let you know the outcomein a future issue of SMarT News.Darcy Hare, Trustee

Research updateProfessor Tamas Revesz and Dr Janice Holton from the Queen Square Brain Bankreport on the grant from the Trust that has facilitated the development of researchinto MSA and enabled a multidisciplinary approach, including collaboration withgenetic investigations.

Research


the pons is related to an increase inastrocytosis in the putamen, an area ofthe brain that is often severely affectedin MSA. We confirmed that there is noaccumulation of α-synuclein inreactive astrocytes. PACRG could bedemonstrated in approximately 80%of astrocytes in controls but there wasonly a mild increase in the number ofPACRG immunoreactive astrocytes inthe putamen in MSA despiteconsiderable astrocytosis indicatingthat a sub-set of PACRG-negativeastrocytes is selectively involved inthe astrocytic respone to disease.

In a genetic study the contributionof the glucocerebrosidase (GBA) geneto MSA was explored. Mutation of theGBA gene may sometimes be importantin pre-disposing towards Parkinson’sdisease but our study has shown that

this is not the case for MSA. It has alsobeen possible to contribute to a multi-centre study in which variants of thegene encoding α-synuclein which areassociated with the development of PDwere also shown to be associated withan increased risk of MSA.

This grant has provided resourcesfor neuropathological studies in MSAresulting in a number of publications inhigh impact medical journals. Thesupport of the Sarah Matheson Trusthas been acknowledged in thesepublications. The grant has facilitatedthe development of research into MSAat the QSBB and importantly this hasenabled a multidisciplinary approachincluding collaboration with geneticinvestigations. It also gave us theopportunity to establish collaborationwith the Sydney Brain Bank, Australia,which is a centre with considerablereputation for research intoparkinsonian disorders.

The work undertaken and thedevelopment of collaborations haspaved the way for our on-goingresearch in MSA and these studies havenow been secured by the award of afurther 3 year research grant by theSarah Matheson Trust. The new grant

has enabled the appointment of a post-doctoral research fellow, Dr ZeshanAhmed, who has considerableexperience in neuropathologicalresearch into parkinsonian disordersand we look forward to providingfurther reports into this ongoingresearch programme in the future.

The QSBB is now a centrerecognised for its contribution toneuropathological research into MSAand as a result of this Dr Janice Holtonwas recently invited to teach about thepathology of MSA at a course inUppsala, Sweden. The purpose of thecourse, organised by BrainNet Europeand funded by the EuropeanCommission, was to promote theharmonisation of diagnosticapproaches in neurodegenerativediseases including MSA and it attractedneuropathologists from across Europe.

Professor Tamas Revesz,Neuropathologist Director

and Dr Janice Holton,Senior Lecturer/Consultant,

Queen Square Brain Bank, London

Request for volunteers with MSA-P to take part in a London research study

The National Hospital for Neurology and Neurosurgery,Queen Square, London are looking to recruit patientswith MSA-P to an MRI study.

They are currently investigating how new MRItechniques may help in diagnosing Parkinson’s Disease(PD), Progressive Supranuclear Palsy (PSP) and MultipleSystem Atrophy (MSA). When patients first experiencesymptoms it can sometimes be difficult to make anaccurate diagnosis. At the current time MRI scanning isuseful for ruling out other problems (for example,strokes or tumours). Sometimes abnormalities are seenon scans that are helpful as they are very specific forone of the illnesses but this is not always the case.

New MRI scanning techniques include the use ofstronger magnetic fields (3T rather than 1.5T) andlooking at the brain in different ways, including so-called diffusion tensor imaging that measures how thestructure of the brain is affected by disease.

They have been looking at these techniques in PD, PSPand controls and are looking to recruit 5-10 participantswith Multiple System Atrophy with predominantparkinsonian features (MSA-P). The aim is to see if theycan find new ways of reliably getting a diagnosis usingMRI, and also to see if they can monitor the diseaseusing MRI scans.

Participation would be entirely voluntary and wouldinvolve coming up to the National Hospital forNeurology and Neurosurgery in Queen Square, Londonfor a morning where a scan could be performed. Therewould also be a clinical assessment. They would be ableto reimburse travel expenses or arrange transport bytaxi. It would be most suitable for those living within60–90 minutes by car of central London.

Further details are available from Luke Massey([email protected]). Those interested would needto be referred by their GP or local neurologist.

A list of papers published orsubmitted for publication areavailable from the SMT office – callLinda on 020 7940 4666

“The new grant has

enabled theappointment of a

post-doctoral researchfellow, Dr Zeshan

Ahmed.”

Research


Dr Valeria Iodice recently joinedthe Neurovascular and

Autonomic Medicine Unit (NAMU)as the first Sir Roger BannisterClinical Research Fellow at ImperialCollege London. Dr Iodice haspreviously worked at the MayoClinic, USA, where she trainedin neurodegenerative disordersassociated with generalisedautonomic failure, such as MultipleSystems Atrophy (MSA), peripheralautonomic neuropathies and focal ortarget-specific autonomic syndromes.

Dr Iodice will be working withother NAMU colleagues, Dr DavidLow and SMT Patron, ProfessorChristopher J Mathias. They will beusing a combination of unique andinnovative techniques to determine theearly damage to the central andperipheral nervous systems to improvediagnosis of MSA, Parkinsons Disease(PD), Lewy Body Disease (LBD) andPure Autonomic Failure (PAF), whichall share similar symptomatology. MSAis mainly a preganglionic centraldisorder, while PD, LDB and PAF allhave a postganglionic autonomicpathology, particularly at the start of theillness. The prognosis and varioustreatment strategies for MSA aredifferent from PAF and PD so it is

especially important to improve thediagnostic accuracy in consideration ofsupportive and preventative aspects ofcare for the patients and their symptomsand for their relatives.

The differential diagnosis betweenMSA and PD can be particularlycomplex and often only made a year ormore from clinical presentation. Afurther complicating factor of MSA isthat, in its early stages, it also sharessimilar symptoms with PAF. However,

by combining a battery of uniqueautonomic tests, Dr Iodice and hercolleagues are to be able make a moreaccurate diagnosis earlier thanpreviously possible. The team willexamine the peripheral as well as thecentral autonomic pathways using a skinbiopsy no more painful than a pin prickand several autonomic function tests.

This study will permit thedelineation of pre- and post-ganglionic nerve damage and,moreover, will define novel biologicalmarkers to help make diagnosis inMultiple System Atrophy, Parkinsonsdisease, Lewy Body Disease and PureAutonomic Failure at an earlier stage.This will help treatment and possibly,in due course, also our understandingof these disorders, especially MultipleSystem Atrophy.

Andrew OwensClinical Research Coordinator,

Imperial College London/ImperialCollege Healthcare Trust

Pioneering new study uses innovativetechniques to diagnose autonomic nervoussystem damage in overlapping disorders ofMultiple System Atrophy, Parkinsons Disease,Lewy Body Disease and Pure Autonomic Failure

“The differential

diagnosis betweenMSA and PD can beparticularly complexand often only madea year or more from

clinical presentation.”

For further information about our studies or autonomic andneurovascular medicine, please visit:

http://www1.imperial.ac.uk/medicine/about/divisions/neuro/npmdepts/clinneuroscience/neurovascular/ and

http://www1.imperial.ac.uk/medicine/people/c.mathias/.Or contact Andrew Owens at [email protected] or Neurovascular and

Autonomic Medicine (Pickering) Unit, 2nd Floor QEQM Wing, ImperialCollege London, St Mary's Hospital, South Wharf Road, London, W2 1NY

New office addressAs from 1st November 2009 the SMT office contact details are:

Sarah Matheson Trust, Southbank House, Black Prince Road, London SE1 7SJ

Tel: 020 7940 4666 Fax: 020 7940 4664 Email: [email protected]

Research


Request for volunteers take part in RESULT, a Birmingham research study

The RESULT study is looking at service provision forpeople with rare long-term neurological conditions.‘RESULT’ stands for Review of Epidemiology and ServiceUse in Rare Long Term Neurological Conditions.People with rarer progressive neurological conditionshave complex needs requiring specialist expertise andresources, yet little is known about the incidence,prevalence, course of disease and burden topatients, families, health and social services.People with conditions such as motorneurone disease and Huntington’s diseasereport variations in services. Little is knownabout continuity of care and how diversity(ethnicity, gender, age) influences care. Thefindings of the study will provide theinformation required to assist service planning andinform the implementation and audit of the NationalService Framework for Long-Term NeurologicalConditions. Specifically, the study will be focussing onpeople with Motor Neurone Disease (ALS), Huntington’sDisease, Multiple System Atrophy, dominantly inheritedataxias, Progressive Supranuclear Palsy, Post PolioSyndrome, and Charcot Marie Tooth Disease. This studyaims to investigate the current provisions of care andtreatment and how they need to change.

Why get involved in the Reference Panel?

It is important that any health care research is done inpartnership with people who either have directexperience of the health condition/the health or socialcare services or who cares for someone who does. Thishelps us ensure the research is relevant to the peoplewho use those services and that new information can bequickly shared with the wider community.

We are inviting people with long-term neurologicalconditions or people who care for someone with

long-term neurological conditions to work with us on thisproject.

How do I get involved in the Reference Panel?

There are a number of ways you can get involved and theamount you get involved is up to you – there is no right

or wrong way.

We want to set up a national panel of patientsand carers who will work with us in differentways across the whole project. About 10 peoplewill be invited to be part of this panel. Thepanel will exist as a ‘virtual’ group which means

anyone from across the country can be part of it– location doesn’t matter. We will set up an email

or telephone link (it depends upon who is takingpart) so we can talk to each other.

The Reference Panel will play an important role in thisproject. It will support a number of different activities asthe project develops. For instance people have alreadyhelped us to draw up participant information leafletsthat have been used to guide people through Phase I ofthe project. A main role of the panel will be to look atthe information coming from the project to see how wecan share it usefully with other patients and carers.

Before you agree to be part of the panel, we will talkwith you about how you can get involved. You can takepart in some or all of the activities – you tell us what andwhen you want to take part.

We are able to pay you for your time and travel costswhilst working on this project.

Are you interested? Do you want to know more?Then please contact: Sonal Shah, Primary Care ClinicalSciences, University of Birmingham, Edgbaston, B15 2TT.Tel: 0121 414 8585. Email: [email protected]

� Hilary Anderson� William Bailey (2008)� Graham Bartlett� Christopher Bourne� Peter Brannan (2006)� Cornelia Coughlin� Michael Cox� Margaret Crossman� Gerry Cusack� Malcolm Done� Celia East� Paul Edwards (2005)� John Gould (2008)

� David Haight (2008)� Robert Hale� Terry Layton� Errol Litherland (2007)� Valerie McCullum (2006)� Robert Mettam� Roy Moore (2007)� Clive Morgan� Mark Mortimer� David Newman� Wayne Norris (2008)� Nessa Oldershaw� Mike Owens

� Malcolm Payne� Alan Ramsden� Susan Rowley� David Simpkins� Bruce Shepherd

� Kenneth Spencer� Syd Stephenson� Joy Trigg� Harry Wilcocks (2008)� Robert Youd (2008)

In Memory for 2009This edition of SMarT News covers the period until 30 September 2009. If you have informed the SMT of a loved one’sdeath and their name does not appear below, please accept our apologies. Let us know and we will rectify this in the nextedition. Some members passed away earlier than 2009 and the corresponding year is shown in brackets next to their name.

muchloved.commuchloved.com is a website dedicated to offering

personalised website tributes in memory of a loved one.MuchLoved is a UK registered charity set up to help withgrieving and healing. The website can be used without

charge or obligation. To visit the website go towww.muchloved.com

Regional support


Contact point

Mrs Jane HandyTel: 01726 74792Or, Ms Jan PearceTel: 01726 861361

Dennis WestripTel: 01271 378273

Mrs Elizabeth BrackenburyTel: 0115 933 3083Or, Mr Ian JonesTel: 0115 919 [email protected]

Lady Laurelie LaurieTel: 01206 210 410

Ms Janice DaviesTel: 01242 224617www.thehewlett.co.uk/index.htm

Samantha PaveyTel: 020 3371 [email protected]

Mrs Ann McLennanTel: 01704 568 [email protected]

Ms Karen WalkerTel: 077103 12552Or, 01274 861 947

Region

Cornwall GroupMeets 4 times per year

Devon GroupMeets 4 times per year

East Midlands GroupMeets twice per year

Essex GroupMeets twice per year

Gloucester GroupMeets (possibly) twice per year

Greater Manchester GroupMeets (possibly) 3 times per year

Lancashire & Merseyside GroupMeets 4 times per year

Yorkshire & Humber GroupMeets twice per year

Contact details

In the first instance, please phoneor email [email protected]

In the first instance, please phone

Holme Pierrepont HallHolme PierrepontNottsNG12 2LD

The Old Rectory,Little Tey,Colchester, EssexCO6 1JA

The Hewlett,Harp HillCheltenham,GloucesterGL52 6QG

In the first instance, pleasephone or email

72 Lynton RoadHillside,SouthportPR8 3AP

In the first instance, pleasephone or [email protected]

Regional Support Group ContactsFurther information on support groups can be found on the SMT website (www.msaweb.co.uk/) under ‘our services’.

Regional Support Groups provide afantastic service to SMT

members, are generally run byvolunteer members and are greatlyappreciated by those able to attend.We are very grateful to those members

Continuing regional supportwho put in so much time and hardwork in organising and running theeight existing groups, all of which gofrom strength to strength. We wouldvery much like to expand the coverageof local groups – it would be fantastic

if everyone in the UK had the optionto attend a group without having totravel too far.

If you are interested in setting upyour own local support group pleasecontact Linda on 020 7940 4666 for

Regional support


Greater ManchesterThe first Greater Manchester JointSupport Group meeting took place on11th September at BASIC, 554 EcclesNew Road, Salford, M5 5AP. This wasinstigated by Patsy Cotton, AdvancedNurse Practitioner, who works withpeople living with Parkinsons disease,MSA and PSP. We are very grateful forher hard work in setting this up. Iattended as did Maggie Rose, NurseSpecialist from the PSP Association. Inthe morning local professionals wereinvited to a study session where eachof the nurses spoke about theirspeciality and Dr Dick, Consultant

Neurologist, gave an overview ofMSA and PSP. We were treated to anice buffet lunch followed by theafternoon support group. Wewelcomed 19 people with MSA andtheir families and feedback waspositive. We are aiming to repeat the

support group meeting on theafternoon of 2nd December at the samevenue. Contact the office/Samantha formore details nearer the time.Depending on demand we would aimto run this group meeting three times ayear. Samantha Pavey

DevonThe Devon support group held their firstmeeting on Friday 24th July 2009 atTomlin Hall in Bickington, NorthDevon. We had a great start with 11people attending. It was a pleasure towelcome Samantha Pavey, the SMT’sNurse Specialist, who gave everyone avery informative talk and slide show andthen answered questions about MSA,

which was appreciated by all themembers present.

As we only had two hours there wasnot a lot of time to discuss any otherissues. I am sure we can make up forthis at the next meeting.

A big thank you to Jan and Janefrom the Cornwall support group whocame all the way up from Cornwall togive us support and help; thank you to

Jane who baked a cake. Tea and coffeewith snacks were available to welcomeeveryone to the meeting. It was agreedwe would hold meetings about fourtimes a year with the next one to be heldat Cullompton at the Baptist Church,High Street, Cullompton, EX15 1AJ onFriday 6th November 2009 at 2.30pm.We hope to see everyone there nexttime. Dennis Westrip

CornwallIn July we went to the inauguralmeeting of the North Devon Group, setup by Dennis and Betty Westrip, andwere delighted to meet them again,along with Samantha Pavey, SMT’sNurse Specialist, and the other MSAfamilies who came along. We wish thenew group continued success.

We now feel we can focus on peoplein Cornwall, and the Devon people whoare nearer to us than they are to

Barnstaple. As usual, it’s the phone callsand emails that keep our group going, asalthough Cornwall looks small on themap, it’s 100 miles from end to end,with a very scattered population.

We feel fortunate to have befriendedtwo Parkinson’s Nurses, who are veryinterested in what we are doing, andhave the medical expertise that we donot. However they are learning fromhaving MSA patients within their remit,and from the various experiences that

each of our group has to tell.We are currently researching where

best to hold our next meeting, probablyin October/November, and will write toall within our catchment area whenarranged. However, we would bedelighted to receive any enquiries fromanyone from outside of Cornwall whomay be visiting – please use the usualcontacts. We would be delighted to hearfrom you.

Jan Pearce & Jane Handy

relevant information and guidance onhow to start one up.

This summer saw the inauguralmeetings of the Devon Group and theGreater Manchester Joint SupportGroup. Both were very well attendedand obviously a great success. Many

thanks to Dennis and Betty Westripfor starting up this much needed groupin Devon and saving members a longdrive to Cornwall.

Also many thanks to SamanthaPavey, Patsy Cotton and Maggie Rosefor setting up and attending the

Greater Manchester meeting. Anumber of groups have meetingsarranged for October, by which timethis newsletter will be at the printers.There will be lots to report on regionalgroup meetings in the Spring 2010issue!

In the last issue of SMarT News we reported that we have re-launched thecontact scheme and it is now up and running. The scheme is telephoneand/or email based and is open to all members, their families and carers. Ifyou would like to be put in touch with someone in your area, please contactLinda in the office on 020 7940 4666 to request a registration form andleaflet that explains the working of the contact scheme.

Area contact scheme re-established

Fundraising


Sophie cycles for her GranddadLast year, Sophie MacInnes sadly losther Granddad, Don MacInnes, to MSA.Sophie, who is nine, decided toorganise a sponsored cycle run byherself for her and her friend, Rebeka.She compiled the sponsor forms on thecomputer and managed to raise abrilliant £350. Sophie was very close toher Granddad and wanted to dosomething to mark his memory. Thankyou Sophie!

North Curry Community CoffeeShop – call in for a coffee!North Curry Community Coffee Shopis run for the benefit of the communityby volunteers who nominate a charityor local organisation that they wish toreceive a cash benefit in proportion tothe time they spend working for thecoffee shop. Three volunteersdesignated the Trust and we received acheque for £72.30. A huge thanks to thecoffee shop for their generosity. Do callin for a coffee if you are in the area(North Curry is near Taunton inSomerset) and tell them you read abouttheir support in SMarT News.

Laura’s Fancy Dress PartyLaura Fergusson’s Dad suffers fromMSA. When she recently celebrated her40th birthday with a fancy dress party,she asked for donations to the Trust toshow her family’s appreciation for allthe help given by SMT. She sent us a

Thanks to everyone who has raised funds for us. We are always amazed and

genuinely appreciative of the wide-ranging efforts that SMT members and their

families make in fundraising. Here are some recent achievements.

Francesca Alcock

Sophie MacInnes (left) and Rebeka

Guests at Laura Fergusson’s party

Car boot sale for SMT

Nicola Davison’s mum, Wendy Horniman, passed away in January 2009. On5th July Nicola, her son and daughter, aunt and a friend ran a stall at a carboot sale and raised an impressive £212.59 for the Trust. Wendy writes thather mum would have been proud of them all and, as they had so much funat the car boot sale, they are going to do it again next year. A big thanks toyou all and good luck for next year!

very generous cheque for £178.45 andsome great photos. It looks like it was aterrific party and we chose to print theone above of some very jolly pirates!Many thanks to Laura and all thepartygoers for your wonderfuldonation.

Francesca Abseils for the TrustIn July, Francesca Alcock did theMEGA Ipswich Hospital abseil in aidof the Trust and raised £112 – the

picture below proves it! Francescachose to give the money to the Trust asher aunt had passed away from MSAearlier in the year and she wished tocontribute to the support given tosufferers and their families. Well doneFrancesca – looks very scary!

Nicola and family at the sale


Fundraising

Les & Joyce Ward organise yetanother event!Les and Joyce Ward have organisedanother event to raise funds for theTrust in memory of their daughterLinda Stone. On 25th July Elaine Gibbshosted a coffee morning and wassupported by members of the CroftSingers choir. They raised a wonderful£221.69. A huge thanks to everyonewho helped make the morning such asuccess.

Keira and friends run the BelfastMarathonKeira Davidson’s Dad, Joe, wasdiagnosed with MSA in 2003 and she,her family and friends wanted to dosomething to support the work of theTrust. In May 2009 Keira and her workcolleagues Jenny Neil, Patrick Dewar,and Angela and Peter Boucher fromASM Horwath Chartered Accountantssuccessfully ran the Belfast marathon asa relay team. They raised a fantastic£1,486.50 plus Gift Aid. A specialthanks to all involved and especially therunners.

Line Dancing in Inverkeithing!Jean Croly, whose husband John diedfive years ago of MSA, nominated TheSarah Matheson Trust to theInverkeithing Tuesday Line Dance Clubas one of their chosen charities toreceive a donation raised from socialevenings and raffles. The Club has sentus a very generous cheque for £250 tohelp support research and awareness ofMSA. A very big thank you to Jean andall the members of the Tuesday Club.

Cycle2cannesOn Thursday 17th Septembercycle2cannes launched the 2010 ridethat will start in London on 11th Marchand finish at MIPIM (a major propertyworld exhibition) in Cannes on 16thMarch. The launch included the first ofKeira and colleagues

Jean Beales, Molly Booth, Les Ward,

Elaine Gibbs and Joyce Ward

Rollapaluza in action!

Again this year the Troy family have raised money to support the Trust. OnSaturday 5th September Matthew, Kelly and Holly were joined by theircousins, Sarah, Corrie and Robbie, on the Junior 3k Great Scottish Run inmemory of their grandmother who died from MSA. The next day theirmother, Anne, ran the half marathon in the pouring rain. Together theyraised a terrific £225 – a big ‘thank you’ to the sponsors and especially therunners. Sadly, no photo of Anne as she felt the drowned rat look does notmake a good picture!

Great Scottish Run – a busy weekend for the Troy family

four Rollapaluza evenings where twocyclists battle it out on a pair of customrollers connected to a huge dial over asimulated distance of 500m at speeds inexcess of 50mph. Readers willremember from the last issue thatcycle2cannes generously gave us£20,000 from the 2009 ride and theywill again be raising money for SMT in2010 – along with four other charities.

The Troy family left to right Corrie, Holly, Matthew, Kelly, Sarah and Robbie

Fundraising

SMarT News – The newsletter of the Sarah Matheson Trust

And remember, the Trust has producedan A3 size MSA/SMT poster for

anyone wishing to use it for fundraising.We send them out in protective cardboardtubes. The posters have been welcomed bythose who have requested a display thatdescribes MSA and the work of the Trust.Please feel free to phone the office, if youwould like one: 020 7940 4666.

...and don’t forget we have boxes and badges available too.

Posters for fundraising events

14

Walking the Illuminations

The HASSRA Fylde Rambling Club has chosen the SarahMatheson Trust as its charity of the year and is supporting JasHans, who has MSA. Jas and his wife, Jo, attend the meetingsof the Lancashire & Mersyside Support Group in Southport.

So far they have organised a tombola stall at a local funday that raised £146 and on the 17 September a group tookpart in a sponsored walk through the Blackpool Illuminations.Jas was able to take part on his mobility scooter and askedpeople to sponsor him instead of giving him gifts for his 65thbirthday in August. The final total raised is not yet known,but it should be over £600. What a great achievement!

Two further events are in the pipeline one of which is an 'Olympic Games', so everyone is in training! A massive‘Thank You’ to Jas, Jo and all the members of the Club for their fantastic support.

Waitrose Community MattersWaitrose Community Matters is ascheme by which branches donate£1,000 between three local good causeseach month. When customers pay fortheir goods at the checkout, they aregiven a token. They then choose whichone of the three good causes they wishto support. At the end of the month,

each cause receives aproportion of the£1,000. In August, theoffice put forward theTrust as a good causeat the Edgware Roadbranch of Waitrosein London. Wereceived £306 –many thanks to

Waitrose! If any of you want tonominate the Trust at your local branch,pick up a nomination form in store.

Fundraising down under!Jessica Kelly, age 11 years, lives inCarnegie, Australia, and wanted to raisemoney to help people with MSA. At herschool pupils had to choose a charity fora project with the title ‘Making aDifference in the Community’. Jessicaand her friend, Mathilda, baked cakes fora student market and raised $90. Shecould not find an appropriateorganisation in Australia and her mother, Janet, suggested she donated the moneyraised to the hospital where her dad, Graeme, stayed for the eight months before hedied from MSA. Jessica spoke to the head nurse at the Bethlehem Hospital whosuggested the money be used to purchase a DVD player and some DVDs for thecommon room. To help raise awareness of MSA her teacher organised for her to beinterviewed by the local paper about why she wanted to raise the money. Well doneJessica and Mathilda. It’s good to hear of events in Australia and thanks to hermother, Janet, for keeping in touch with us.

We are very grateful for all your fundraising activities.The Treasurer puts in a small plea however. Could any cheques be made

payable to ‘Sarah Matheson Trust’ (not MSA).

Jessica Kelly and Mathilda

SMarT News – The newsletter of the Sarah Matheson Trust

Christmas cards

15

To order, please send us the slip below, indicating whichpacks you would like,

with a cheque made payable to“Sarah Matheson Trust” and post to:

Sarah Matheson Trust,Southbank House,

Black Prince Road, London SE1 7SJ

Thank you for your support.

Sarah Matheson Trust Christmas Card Order

Name..........................................................................................................................................................

Address ......................................................................................................................................................

............................................................................Postcode.........................................................................

Telephone no. ...................................................................................

Total payment enclosed £ ...............................................................

Number of Total costpacks including postage

1 £4.25

2 £8.85

3 £12.35

4 £16.25

5 £20.20

6 £23.70

7 £28.90

8 £32.40

9 £35.90

10 £39.40

Christmas Cards 2009Now Available to Order!

This year we have two new designs –“Moonlit Night” and “Parcels Under the Tree”. Theyare available in packs of 10 for £3.50 plus postage.

The greeting inside reads “With Best Wishes forChristmas and the New Year”

Moonlit Night

Parcels Under the Tree

Either cut here or photocopy

Moonlit Night

Parcels Underthe Tree

No. of packs

16

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:Nicholas BuntMrs Robin BrackenburyMichael EvansValentine FlemingMs Darcy HareAlexander LoehnisMrs Ann McLennanGeoffrey MurrayEileen Lady Strathnaver OBELady Harriot TennantKaren Walker

SMarT News Editor:Geoffrey Murray

All correspondence andenquiries to:Sarah Matheson TrustSouthbank HouseBlack Prince RoadLondon SE1 7SJTel: 020 7940 4666Fax: 020 7940 4664www.msaweb.co.uk

The Trust is financed entirely byvoluntary donations.Registered Charity Number 1062308

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Current MSA members 825Other patient members 38Relatives and carers 464Professionals 1465Others 174Total 2966

Membership Numbersas of September 2009

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 anydonations 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 an in memorium for a person’s life.Contribute to SMarT NewsSharing your experiences and tips with other members helps keep it your newsletter.Form a local SMT groupLink with the SMT office and independently run a group to provide local groupsupport.Raise awareness about MSAShare our information with family, friends and the health professionals you meet.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. This Gift Aid could raise the SMT’s income by as muchas £20,000 extra per year. We have Gift Aid forms available at the SMT office.

Don’t forget: the SMT is your charity.Donate now!If you would like to make a donation to the Sarah Matheson Trust please complete theform below and send to the office. If you are a UK taxpayer we can increase the valueof your donation by 28% by reclaiming the tax as Gift Aid.

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

mean the Sarah Matheson Trust necessarily endorses them.

Ways to support the SMTand help the Trust grow

Next issue All articles to be received by the office by 15th January 2010

Name

Address

Post code

Signature Date

� I would like to make a regular donation by standing order.Please send me the appropriate form.

� I would like to make a donation of £and enclose a cheque made payable to ‘Sarah Matheson Trust’.

� I am a UK taxpayer and wish all gifts of money that I have made in the past6 years and all future gifts of money that I make from the date of thisdeclaration, until I notify you otherwise, to be treated as Gift Aid donations.

PLEASE MAKE ALL CHEQUES PAYABLE TO ‘SARAH MATHESON TRUST’

MSA News (issue 26)

Documents

Transcript of MSA News (issue 26)