msa news (issue 29)

It’s been a very busy few months at the Trust.Our volunteer-led support groups,researchers and nurses have been working hard in their respective roles andsome of their activities are covered here: Dr Anna Sailer describes how herwork investigating the genetics of MSA could lead to a better understanding of

the disorder; specialist nurse Samantha Pavey warns of the risks of being temptedby “miracle” treatments, and new Surrey support group leader, Peter Turvey,shares his experience of the group’sfirst meeting.

At head office we’ve beenanalysing the amazing response toour membership survey – and thankyou to everybody who replied. Yourfeedback will help us form ourservices for the future, and I’d liketo share some of the results withyou now.

You told us that encouragingthe government to improve NHSservices should be a key priority forthe Trust. We’ve already started toidentify ways in which we can getMSA higher up the healthcareagenda, and will keep you posted.Increasing awareness about MSA inthe general population was also considered to be a key priority, and 93% ofrespondents said they had never heard of MSA before you, or the person you carefor, was diagnosed so there really is a need to make MSA more visible.

Funding MSA research and expanding the nurse network, not surprisingly, wereconsidered essential areas for the Trust and we are looking at ways to develop bothareas, as well as the possibility of securing significant funds through the launch ofan appeal in our anniversary year of 2012.

Our range of literature was shown to be our most important service, and it’sencouraging to learn that 80% of respondents share our leaflets with family andfriends. Many of you said you are keen to get more information and support throughthe internet, and we’re currently working on updating our website to make it easierto use and to include “virtual support groups” in the form of Blogs and Forums.

We’ve learned a lot from the survey and will share more of its results and whatwe’re doing to develop services in future issues.

Lastly, you’ll have noticed we now have this publication’s new title, MSA News.Not, perhaps, the most exciting name but it does show our determination to makeMSA more visible at every opportunity. We’ve upgraded its status too, fromnewsletter to magazine as we try to broaden the range of articles we cover and tomake a statement about how important news on MSA is!

Nickie Roberts, Executive Director

Contents

Pension protectionfor carers 2Carers UK highlights concernsabout pension provision for carers

Trust Carers Awards 4Your chance to nominate your carer

Rare Disease Day 2011 5Details of next year’s event

Investigations intothe genetics of MSA 6Anne Sailer explains her researchproject on genetic risk factors

Regional support 8Contacts and reports

Alternative medicines 11Samantha Pavey warns aboutmedicines from unrecognisedsources

Win football history 12Highest pledge wins...

Fundraising 13More fantastic efforts in raisingfunds for the TrustChristmas cards 15Sort your Christmas card needs andhelp the Trust at the same time...

How to get involved 16

Multiple System Atrophy TrustFounded by Sarah Matheson

The official magazine of the Multiple System Atrophy Trust

Issue 29 Autumn 2010

The Multiple System AtrophyTrust provides a support andinformation service to peoplewith MSA, their families and

carers, healthcare professionalsand social care teams.

We also sponsor and supportresearch into MSA.

SMarT News Autumn 11.qxd:SMarT News Autumn 2006 mike 4/10/10 16:15

MSA News – The official magazine of the Multiple System Atrophy Trust – Autumn 20102

According to Carers UK, a quarter of a million people caring for an ill or disabledfriend or relative could be missing out on a top-up that protects their basic andsecond State Pensions.

Carers miss out onpension protection

An estimated one milliion peoplehave given up work to care for

someone. Pensions Minister, SteveWebb, wants “hidden” carers who couldbe eligible for Carer’s Credit to benefitand is encouraging people to checktheir personal situation by visiting theDirectgov website (www.direct.gov.uk/carers) or by calling the Carer’sAllowance Unit (0845 604 5312).

People giving up their time for 20hours or more a week to provide unpaidcare for a loved one, who are not alreadyclaiming Carer’s Allowance, couldqualify.

Carer’s Credit is not a cash sum butmeans that a carer’s financial future canbe protected. It credits a person’sNational Insurance record for the timethey are caring, helping them to buildup their State Pension. The Departmentof Work and Pensions estimates suggestthat around 160,000 more people couldstart to gain Carer’s Credit for the basicState Pension in 2010. New weeklyNational Insurance and earnings factorcredits for carers have been availablesince April of this year.

Could you benefit from changesto pension rules?There are new rules to help carers whoare missing out on National InsuranceContributions. You could if you are inone of these situations:• You care for 20 hours or more a

week but miss out on Carer’sAllowance because you don’t carefor 35 hours or more

• You care for someone who can’tor refuses to claim disabilitybenefits

• Where there is more than one of youcaring for a disabled or ill personand someone else is getting theCarer’s Allowance for that person

• You look after several people butcannot claim Carer’s Allowancebecause you do not care for anyone of them for 35 hours

• You are still providing a lot of carefor someone who has gone intohospital or a care home, but cannotget Carer’s Allowance because theydon’t get disability benefitsbecause they have been in hospitalor a care home

The Trust is an affiliate member ofCarer’s UK, and information in this articlehas been reproduced from their material.

Carer support


Carers support

MSA News – The official magazine of the Multiple System Atrophy Trust – Autumn 2010 3

How can carers get National Insurance Contributions?

Are you claimingCarer’s Allowance,

Jobseekers Allowance orEmployment andSupport Allowance?

You should be able to claim Carer’s Credit towards yourpension – so long as the total care you provide is more than 20hours a week, even if that includes caring for different people(as long as those people have qualifying benefits or a health orsocial care professional would confirm the care provided).

Would a health or social careprofessional confirm that the level ofcare you provide is appropriate?

You should be ableto claim Carer’s Credittowards your pension

How to claimIf you think you might be eligiblefor the Carer’s Credit you shouldcontact the Carer’s AllowanceUnit on 0845 608 4321 or

Textphone on 0845 604 5312.

You should check tosee if you are eligible forother benefits which couldprotect your basic StatePension (like Jobseeker’sAllowance or EmploymentSupport Allowance).Protection can also be

achieved through earningat least the lower earningslimit (£4,940 in 2009/10)through paid work.

Icare forless

than 35hourseachweek

I carefor morethan oneperson, but

noindividualfor 35 hoursor more

Someoneelse getsCarer’s

Allowancefor theperson Ilook after

I don’tclaim

because itwould

affect thebenefits ofthe personI look after

The person Icare for (forat least

20 hours aweek)does notwish to orcan’t claimDisabilityLiving

Allowanceor

AttendanceAllowance

I wasclaiming Carer’sAllowance but itwas stoppedbecause theperson I carefor went intohospital. But I

am stillproviding atleast 20 hoursof care to themwhilst they arein hospital.

Why?

Carer’s Allowance provides creditsboth to protect your basic State Pensionand build entitlement to the State SecondPension. However, if you are claimingJobseekers Allowance or Employment

Support Allowance, whilst these benefitsprotect your basic State Pension, youshould consider applying for Carer’s

Credit to build entitlement to the StateSecond Pension.

Yes

No

Yes No


Carers support


• www.direct.gov.uk/pensions• www.direct.gov.uk/carers• State Pension forecast: 0845 3000 1668 andonline at https://secure.thepensionservice.gov.uk/ statepensionforecast

• State Pension claimline (you shouldautomatically be sent claim forms fourmonths before you reach pension age. Ifyou have not received the forms you cancontact the claimline): 0800 731 7898

• Pension Tracing Service (if you’ve lost touchwith your occupational or personal pensionscheme, this service may be able to help):0845 600 2537, or www.direct.gov.uk/en/Pensionsandretirement planning

• The Pensions Advisory Service:0845 601 2923, orwww.thepensionadvisoryservice.org.uk

• Carers UK’s adviceline: 0808 808 7777• Carer’s Allowance Unit: 0845 608 4321• Pension Credit Hotline: 0800 99 1234• Benefit Enquiry Line: 0800 88 22 00

Useful Contacts

There are two types of awards. The first is thePersonal Carer Award which is for a spouse,friend, partner, family member or neighbour.We’d like to know who helps you getthrough the day or week, who keeps yousmiling, who makes a difference by doing orsaying the things that matter.

Our second award isthe ProfessionalAward and is for anyprofessional thathelps you. This couldbe a therapist, nurseor doctor – it couldalso be ashopkeeper whoputs a chair out

especially for you, or thelibrarian who tracks downthat talking book you wantto listen to.

To nominate somebody,please write or telephoneus with the person’s nameand the reason why you would like tonominate them. You can nominate oneperson for each category.

Each person nominated will receive acertificate, small gift and a mention in afuture edition of MSA News.

Your nominations will need to be with us bythe end of December 2010. We look forwardto hearing from you!

Nominations for ourCarer Awards is now open!

Six things carers can do to make the mostof their pension

1 Find out how much State Pension you have built up by gettingyour own State Pension forecast and checking your NationalInsurance (NI) Contributions record.

2 Find out if it is worth paying additional Contributions for anyyears of NI Contributions you have missed. This could give you abigger State Pension.

3 Carers can get help to get a full basic State Pension From April2010 carers who care for a total of 20 hours per week or morebut do not get Carer’s Allowance may be able to apply for aCarer’s Credit which will help more carers get a full basic StatePension.

4 From April 2010 it will be easier to qualify for a full basic StatePension as you will need only 30 years of NI Contributions toget a full basic State Pension (instead of the current 39 years forwomen and 44 years for men) which will help carers who havegaps in their NI record.

5 Don’t forget you can get credited with NI Contributions if youmeet certain conditions or receive certain benefits includingCarer’s Allowance, Jobseeker’s Allowance, Employment andSupport Allowance and Working Tax Credit.

6 Track down any lost private or work pension pots through thePension Tracing Service. It’s simple and free to use.

If you are already getting a State Pension check if you could get other

benefits including Pension Credit Housing Benefit or Council Tax Benefit.


Rare Disease Day


The purpose of Rare Disease Day isto raise awareness of rare diseases

and to emphasise their importance as ahealth priority. In the past, policymakers have tended to overlook rarediseases. This is partly due to themistaken belief that rare diseasesaffect a small number of people; thatthere is little that can be done to helppatients and families with rarediseases or that what can be donewould be unfeasibly expensive. RareDisease Day provides the opportunityto highlight that there are over 6000rare diseases that will affectapproximately 3.5 million peopleacross the UK (or 1 in 17 people).Collectively rare diseases are not rare!As a result they need to be viewed asa priority.

Rare Disease Day provides theopportunity to bring all thestakeholders involved in rare diseasestogether. This includes patients,families, carers, policy makers,healthcare providers, clinicians,

researchers, health-workers, thepharmaceutical industry and patientorganisations. By acting simultan-eously and collaboratively, nationallyand internationally, the voice of raredisease patients can be heard by morepeople.

Rare Disease UK is coordinatingRare Disease Day 2011 in the UK.Rare Disease UK (RDUK) is thenational alliance for people with rarediseases and all who support them.RDUK is leading the campaign for astrategy for rare diseases in the UKwith the support from a range ofstakeholders and organisations,including the Trust.

The Government committed toimplement a strategy to encourageresearch into rare diseases and toimprove care and support forpatients when it signed the EuropeanCouncil Recommendation on anaction in the field of rare diseases inJune 2009. RDUK is campaigning toensure that the Government does infact act on this commitment and

develop an effective strategy in the UK.RDUK has been conducting an

investigation over the past 18 monthsinto why a strategy for rare diseases isneeded and what an effective strategyshould include. The final report fromthis work will be launched to coincidewith Rare Disease Day 2011 atfour parliamentary receptions atWestminster, the Scottish Parliament,the Welsh Assembly and the NorthernIreland Assembly.

How you can get involvedThere are a number of ways in whichyou can help raise awareness of rarediseases on Rare Disease Day 2011,including holding your own event orparticipating in media work. One ofthe most effective ways to raiseawareness is by writing to your MP tolet them know about the day, yourcondition and the Trust. RDUK will beproviding a template letter for you tosend to your MP and details of otherways you can get involved. TheTrust’s website will provide furtherinformation about how you can getinvolved, but if you would like to signup to the RDUK newsletter to getinformation directly and to showyour support for a strategy for rarediseases you can sign up for free at:www.raredisease.org.uk.

For more information onRare Disease Day please visitwww.rarediseaseday.org.

Please help make Rare DiseaseDay 2011 the most successful yet!

Help raise awareness onRare Disease Day 2011Rare Disease Day is an annual event that takes place on 29 February (ie, a rare day!).As 2011 is not a leap year, the event will be marked on Monday, 28 February. Thiswill be the fourth Rare Disease Day. What initially began as a European initiative hasgrown and is now marked in countries all over the world.

“Rare Disease Dayprovides theopportunity tobring all thestakeholders

involved in rarediseases together.”


Research

Dr Anna Sailer is working at the Institute of Neurology in theDepartment of Molecular Neuroscience in London. Funded by a Trustgrant, she works with Professor Henry Houlden investigating geneticrisk factors for MSA. We asked Anna to tell us about her research.

Trust researchers investigatethe genetics of multiplesystem atrophy

very exciting finding in MSA as it is thevery first genetic risk factor that couldbe identified.

On the other hand MSA is a distinctdisease of its own, and we want to findthe genetic risk factors that are specificto it. This is my main focus at themoment. We do this with a GenomeWide Association Study (GWAS). Inthis study we analyze more than600,000 markers that are scattered allover the genome of MSA patients andcompare the results to data fromhealthy controls. If we find that somemarkers are more frequent in MSApatients than in controls, that may leadus to believe that the gene in that areaplays a role in MSA disease risk. In thepast year we placed great effort intocollecting enough MSA patients for thispart of the project.

Why has this been important tothe progress of the project?

The genetic differences betweenMSA patients and controls can bevery subtle. We therefore needlarge numbers of MSA patients andcontrols to be able to detect them.So collecting a large study grouphas been our biggest hurdle so far.It is not easy in MSA. First of all,the disease is very rare. Secondly,as probably some members of theTrust have experienced, it is noteasy for doctors to diagnose.

Could you give a summary of theproject’s objectivesMultiple system atrophy (MSA) occursin adults and presents with acombination of parkinsonism, cere-bellar signs and autonomic failure. Whyand how people develop MSA is stilllargely unknown. We want to identifygenetic risk factors that contribute tothe development of the disease.Identifying such genetic causes andunderstanding how they contribute todisease development is very importantfor future research into treatmentpossibilities of MSA.

Does this mean MSA is a geneticdisease?MSA is certainly not inherited in theclassical monogenetic fashion whereone gene is mutated and passed on fromparents to offspring. MSA does not runin families and was therefore alwaysconsidered as a “sporadic” or non-genetic disease. However, in thelast few years science has shownthat also sporadic diseases havesome genetic component. Thegenetic predisposition is thoughtto be complex and is likely to bemade up of a number of riskfactor genes that contribute to thedevelopment of the disease. Theeffect of each genetic risk factor isprobably very small and othernon-genetic factors certainly play

a role in disease development. In otherwords, genetic risk in MSA is not blackand white like in classical geneticdiseases but rather different shades oflight grey. Which shade of grey wedon’t know yet, and it may be differentfor every MSA patient.

What have been the main areasyou have concentrated on sincestarting the project in October2008?Our approach has been two-fold. A lotof genetic research has already beendone in similar more common diseaseslike Parkinson’s disease. So, firstly, welooked at risk factors for these diseasesto see if they also play a role in MSA.In doing this, a genetic associationbetween MSA and the alpha-synucleingene was found by a collaboration ofour team and American researchers lastyear. This gene was already known toplay a role in Parkinson’s, but it is a


Collaborators for genetic studies in MSA

6


Research


Our resources here at the Institute ofNeurology are very good; its Queen’sSquare Brain Bank has the largest tissuecollection of MSApatients in the world.In addition MSA patients are frequentlyseen at the National Hospital ofNeurology and Neurosurgery. However,for a GWAS this is not enough. Wetherefore set up collaborations all overEurope and the US. Convincing otherresearchers to contribute DNA samplesto our study was not easy in thebeginning. Many were in doubt whetherwe would collect enough MSA patients.However, with the help of manycollaborators inside and outside thisInstitute (see map) we have managed tocollect nearly 1000 DNA samples.

What will your focus be for thenext 6-12 months and why?Now that we have collected nearly 1000samples we will begin to process themand analyze the data. While collectingsamples we performed a preliminarystudy and we are hoping for results soon.

So will the project be completedsoon?Unfortunately science never works thatfast!Although we hope to get informativedata in the next few months we still needto do follow-up work. Before we can besure that a gene really plays a role in MSAwe have to confirm and validate thefinding. Therefore collecting DNA fromMSApatients will continue so that we canreplicate our results in a second group.

What will happen next?The GWAS will certainly not giveanswers to all our questions. It will notidentify all genetic risk factors and itwill not tell us why a genetic risk factorcontributes to disease development.We are already establishing a newproject that will look at all the genes ingreater detail by using a method calledexome sequencing.

This is very new technology. WhenI started less than two years ago wedidn’t even think this would bepossible as part of my project. Buttechnology has developed very fast. Itis still very expensive and at themoment we can only do this in a smallnumber of MSA patients. However, ascosts come down and as we get morefunding we will extend and hopefullyidentify further MSA genetic riskfactors.

What are you anticipating fromyour studies?We expect to discover new genes thatspecifically contribute to MSA risk andthat play a role in disease development.Finding these MSA specific mechan-isms is also very important for futuretherapeutic research. As an example,there is a lot of overlap between MSAand Parkinson’s disease. Neverthelessthe response to Parkinson’s drugs likeL-Dopa in MSA is generally very low.We will therefore have to find newMSA-specific targets. However, theseare unfortunately long-term goals.

Glossary

DNA (deoxyribonucleic acid): Themolecule holding the code in whichgenetic information is stored in cellsGene: A stretch of DNA thatencodes a specific informationGenome: The entirety of all genesthat an organism contains. Thehuman genome consists of about20,000 different genesMutation: A change in the geneticcode of a gene that alters thefunction of the gene and can leadto diseaseMonogenetic disease: A disease thatis caused by a mutation in onesingle geneComplex genetic disease: A diseasethat is caused by subtle changes inseveral different risk genes. Otherfactors (eg, environmental)contribute to disease riskGenetic predisposition: This is theinherited risk of developing adisease. A genetic predisposition fora disease does not mean that theperson will get that disease, but theperson’s risk may be higher thanthat of the general population

Do you want to get involved in MSA research?The National Hospital for Neurology and Neurosurgery and the Institute ofNeurology, Queen Square, London are looking to recruit patients with MSA fora study on genetic risk factors in MSA. The aim of the study will be to improvemedical knowledge and understanding of MSA (see article).

Participation is entirely voluntary. All we need is a blood sample and we mayask for your permission to contact your GP or neurologist for details on yourdisease. We will need approximately 3 to 4 teaspoons of blood (15-20ml) fromwhich we isolate genetic material (DNA) for our study. Taking the blood samplecan be arranged locally through your GP.

For further details please contact Dr Anna Sailer or Professor Henry Houlden([email protected]; Institute of Neurology, Queen Square, London WC1N 3BG).

How do you feel the project willcontribute to the understandingof MSA?To-date the causes and diseasemechanism in MSA are largelyunknown. In other neuro-degenerativediseases like Parkinson’s or Alzheimer’sdisease huge progress in understandingthe basic mechanisms was made byidentifying genetic factors. This projectaims to identify similar causes for MSAthat will hopefully lead to a betterunderstanding of the disease.


Regional support


Close contact with others affected by MSA can provide a supportive environment forpeople with MSA and carers. Many people who have attended the Trust’s supportgroups have frequently told us how informative and beneficial the meetings are.These sentiments came through loud and clear in the results of our first Members’Survey. Jackie Davis, the Trust’s Information and Support Officer reports.

Meeting people locally

The results of the Trust’s firstMembers’ Survey (2010) clearly

indicate that, for those who haveattended support group meetings, athird found it a good opportunity tomeet people in a similar situation. Ofpeople who have attended a meeting,69% found them helpful and 67% foundthem informative.

The survey suggests that a majorconcern among Trust members is thelack of local groups: 66% ofrespondents would like more regionalgroups throughout the UK, 30%would like more frequent meetingsand 46% would like more healthcareprofessionals to talk at meetings. Thebar chart shows how you answered.

This feedback is important andreinforces the Trust’s commitment todeveloping and supporting more regionalgroups. Since April 2010 the number ofgroups either running or proposed hasincreased from 10 to 16 and now includeScotland and Ireland (Northern andSouthern). The Trust is also very keen tohelp group leaders build the content ofmeetings, and will be working with themto invite guest speakers to meetings,such as local healthcare professionalsor local authority representatives, to talkabout local services, resources and toanswer questions.

To grow the support group networkthe Trust needs volunteer group leaderswho, in turn, are supported byvolunteers who help them at eachmeeting. Assistance ranges fromsending out leaflets to making cups oftea, but it is all invaluable support.

Meeting people across the UKThe survey also indicated that over halfof all respondents (56%) are interestedin joining a ‘virtual’ support group,partly to overcome travel problemsfaced by so many people with MSA.We’re currently reviewing our websiteand will be looking at the best way toset up a virtual form of support group,which may include Blogs and Forums.

One respondent commented, anonline virtual group “would be helpfulbecause I feel poorly somedays andwould not be able to attend a group butcould catch up online whenever I feltwell.”

Another added, “Chatting withother carers could be helpful. I wishthat an online network was available asI would like to be able to contact other

carers for sharing knowledge, advice,empathy, etc.”

Some people commented in thesurvey that, although interested inaccessing online support, they’reunfamiliar with the use of computersand the internet. As part of our websitereview, we will look at how we can helppeople become comfortable withcomputer use.

Watch this space!

If you are interested in setting up yourown support group, if you can assist inthe running of a group, or you simply

want to attend one, please contactJackie Davis at the Trust

on 0207 4960 4666 or [email protected]. You can also

speak to your local support group leader.

If you have been to a support group meeting, in what way do youthink they could be improved?

Moreofthem

aroundthecountry

Moremeetings

duringtheyear

80

60

40

20

0

Moreaccessible

venues

Morehealthcare

speakers

Morepracticalinformation

onlivingwithMSA

SeparateMSA

carers’meetings

Moreinformation

for carers


Regional support


Surrey group meeting14th August 2010The first meeting of any support groupoften sets the tone for forthcomingevents, and it was fantastic to see suchenthusiasm from the Support GroupLeader, Peter Turvey, his family and allthe new attendees.

Over 40 people went along to themeeting. This included Samantha Pavey,MSA Specialist Nurse, a Parkinson’snurse specialist and a Parkinson’ssupport and information officer. ClarePowell one of our Trustees who isSurrey-based, also attended.

Samantha talked to the group aboutthe wide-ranging symptoms thatindividuals might experience anddifferent ways of addressing these. Shealso discussed the importance of

regular consultation with differenthealth care professionals such as speechand language therapists and Parkinson’snurses. Samantha explained thatengaging the services of a hospiceshould be a top priority as most offerfamily support, day centres andsymptom management.

After hearing from Samantha, thegroup was canvassed on the set-up offuture meetings and it was agreed tomeet four times a year and to invitealong specialist speakers. There is alsointerest in hearing different people’sstories. Jackie Davis

Devon group meeting – 2nd July 2010Our last meeting was held at the Baptist Church Hall inCullompton on Friday, 2nd July. We had another verygood attendance with 18 people, including carers.Unfortunately, four people were unable to attend due toillness and we all wish them well. It was a pleasure towelcome two new members from Plymouth and I hopethey found the meeting helpful.

Everyone was pleased to see Samantha Pavey, theTrust’s Specialist Nurse for the Southern Region, who wasasked many questions during the afternoon. Her answersand useful tips were very welcome. Devon has beenallocated three new Parkinson’s nurses, and I will beingdoing my best to see if they can attend a future meeting.

The group discussed the charity’s change of name toMultiple System Atrophy Trust and everyone wassupportive of this.

Refreshments were served during the afternoon andthank you to Brenda Nan and all the carers for their help.The next group meeting will be held at the same venue onFriday, 5th November from 2.00-4.00pm.

Ian and his wife, two of our members, are planning tomove before our next meeting so we wish them well forthe future. Thank you to everyone for their support at thesemeetings and we look forward to seeing you next time.Dennis Westrip

One of the Trust’s key aims is to offer support and information to people whose livesare affected by MSA, and the work of the support groups and their volunteer leadershas always played a significant role in reaching people across the UK. The magazinehas always carried brief reports from group meetings. With the support networkgrowing, we thought we would take a more in-depth look at some groups eachmonth on a rotational basis.

NorthKatie Rigg 01434 [email protected]

ScotlandIrelandCumbria

NorthumberlandDurhamYorkshireLancashireCheshire

StaffordshireDerbyshire

NottinghamshireLincolnshireTyne & WearLeicestershireand RutlandCleveland

N. Ireland*

S. Ireland*

Wales

Scotland*

London*

Lancashire andMerseyside

DerbyshireWarrington*

Devon

Cornwall

Essex

Gtr Manchester

Surrey

Gloucestershire

EastMidlands

Yorkshire

WalesAvonHerefordshireGloucesterOxfordshireHampshireWiltshireShropshireNorfolk / SuffolkBuckinghamshireLondon / Surrey / Kent / SussexDorsetCambridgshire / EssexSomersetDevon / Cornwall

SouthSamantha Pavey 0203 371 [email protected]

Areas covered by theMSA Specialist Nurses

Counties with a support groupoperating are shown in yellowAn asterisk (*) indicates a newsupport group is in preparation

Peter Turvey and his wife, Louise


Regional support


Region

Blackpool

Cornwall

Derbyshire

Devon

EastMidlands

Essex

Gloucester

GreaterManchester

NorthernIreland*

NorthLondon*

Scotland*

SouthernIreland*

Southport

Surrey

Warrington*

Yorkshire& Humber

Group leader/Coordinators

Jo Hans

Jane HandyJan Pearce

Kulwant Sehmbi

Karen White

Dennis Westrip

Elizabeth Brackenbury(Trustee)Ian Jones

Lady Laurelie LaurieSir Bay Laurie

Janice Davies

Katie Rigg

RosemaryArbuthnott

Samantha Owen

To be confirmed

George Hunter

Jo HansFraser Gordon

Peter Turvey

Linda Moss,Parkinson’s Nurse

Karen Walker(Trustee)

Email

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

Phone

01253 821693

01726 7479201726 861361

01283 735847

01271 378273

0115 93330830115 9199294

01206 210410

01242 224617

01434 382931

00353872525252

01253 82169301704 894129

01483 827395

01925 867710

01274 861947

Next meeting

Wed, 27th Oct 20102.00-4.00pm

No meetings currentlyscheduled for 2010

Thurs, 30th Sept2.00-4.30pm

Fri, 5th Nov 20102.00-4.00pm

Wed, 6th Oct 20102.00-4.00pm

Mon, 25th Oct 2010From 12.00pm

Thurs, 21st Oct 20103.00-5.00pm

Fri, 22nd Oct 20101.00-3.00pm

First meeting to beheld beginning Oct

Meeting held in Sept

Thurs, 2 Dec 20102.00pm

Meeting held in Sept

Venue

Thornton CleveysBlackpool

Skills Centre,50 Swallowdale Road,Sinfin, Derby,DE24 9NT

Baptist Church, High StCullompton, DevonEX15 1AJ

Holme Pierrepont HallHolme PierepontNG12 2LD

Great Tey Village HallGreat Tey, Essex

The Hewlitt Arms, HartHill, Cheltenham GL52

Mayo Building, HopeHospital, EcclesManchester

Venue to be confirmed




St James Church HallLulworth Road, BerkdaleSouthport

Shalford Village HallKings Road, ShalfordGuildford GU4 8JU


The Nerve Centre2nd Floor, StandardHouse, Half MoonStreet, HuddersfieldHD1 2JF

Regional support groupsThe following is a list of current and new regional MSA Support Groups. If you are interested in attending a Group,please either contact the Support Group Leader directly or register your interest with the Trust Head Office (020 7940 4666).

Support groups are open to people with MSA, their carers and family members. The groups provide an invaluable opportunity to shareconcerns in an informal setting, to find out about local resources and to make contact with people in a similar situation. Once you haveregistered your interest, you are welcome to attend whenever you can and whenever you are feeling up to it. The group leader willkeep you informed of forthcoming meetings and local information.

* New groups - details and dates to be confirmed


Treatment


As with much in life,generally if something

appears to be too good to betrue then it probably is, butselling drugs and treatmentsthat have not been proveneffective is known as healthfraud.

At best such treatments maynot work, at worst they can bedangerous. Importantly, they mayinterfere with prescribed medi-cations you are already taking aswell as potentially wasting yourmoney.

These types of claim are oftenreferred to as “alternative” healthsolutions or remedies and canoften be spotted by the use oftestimonials from “satisfiedusers” who have experienced amiracle cure, anecdotes andsubjective judgment. However,they will usually not have beensubjected to peer review orcritical evaluation.

A treatment that is not part of therecognised mainstream could begenuine but is more likely to beexperimental, unproven, questionableor perhaps even a hoax. For a treatmentto be considered genuine it has to havebeen scientifically proven for safetyand effectiveness.

Any treatment will come under oneof three possible categories:

Beware ‘alternative’health solutionsDo you sometimes feel tempted by ‘miracle’ treatments or cures? Well you mightwant to think carefully before you follow up any of these. As MSA Nurse Specialist,Samantha Pavey explains, these claims may be made by organisations promoting aproduct that is not recognised by the scientific and medical community and may nothave been properly evaluated.

• It may be genuine• It may be experimental: it seems

credible and is undergoinginvestigation

• It may questionable: the claimsmade for it are unproven andimplausible

Sometimes a solution fits into morethan one category, for example atreatment generally recognised as beinggenuine for another illness may, in fact,

claims are made of proven clinical trialsfor the product, find out if the trialresults are available and ask to seethem. If you are refused for any reason,treat the product with suspicion.

Before agreeing to take a treatmentfor which you have seen promisingadvertisements or articles in the press,please first contact your GP, consultantor the Trust to check if it is known to beeffective or proven.

not be effective – or may even beworthless – in treating MSA.

If you hear about a treatmentfor MSA from a source other thanyour GP, consultant, the Trust orother recognised authority, tryposing the following questions:• Is online purchasing of the

treatment available?• Are 'patient testimonials'

available?• Is the treatment described as a

'cure'?• Is the treatment described as

'having no side effects'?• Does the treatment have

'limited availability' and is'advanced payment'required?

• Are there promises of 'money-back guarantees'?

If one or more of these questionscan be answered 'Yes' then treatthis as a warning that the productmay not be a genuine treatment. If


Noticeboard


� Vera Drew (2009)� Ellen Moffett (2009)� Janet Bunt� Jacqueline Cawthorne� Paul Couture� John Dilks� Rosemary Fordham� Lalitha Fraser� Mary Fraser� Keith Gordon

� Donald Johnson� Beryl Kirkham� Pamela Kovacs� Charlotte Lawson� Sylvia McCredie� Elizabeth Milburn� Eric Mobbs� Jean Molyneux� Derek Ormerod� Alan Ross

� Douglas Sinclair� Basil Smith

� Jeanne Smith� John Strachan

In Memory If you have informed the Trust of a loved one’s death and their name does not appear below,please accept our apologies. Let us know and we will rectify this in the next edition. Some members passed away earlierthan 2010 and the corresponding year is shown in brackets next to their name.

muchloved.commuchloved.com is a website dedicated to offeringpersonalised website tributes in memory of a lovedone. MuchLoved is a UK registered charity set up tohelp with grieving and healing. The website can be

used without charge or obligation. To visit the websitego to www.muchloved.com

If football’s your thing, or you know somebodywho loves the game, now’s your chance to grab

a piece of football memorabilia.The Trust has been given this fantastic

Southampton football shirt (size: small adult) andball, signed by players, as a “fundraiser” for ourwork. The shirt and/or ball will be sent to their newhomes (in time for Christmas?!) to the lucky peoplewho get in touch with Lyn Shaw at the office by5pm, Thursday, 25 November 2010. The highestpledge secures the shirt or the ball (please say whichyou would prefer).

Thanks and good luck!

Your chance tohave a piece offootball history!

Researchers need help nowfrom people with MSAAre you happy with the service you receive from health and social care?Well this is your opportunity to share your thoughts with researchers atthe University of Birmingham who are keen to hear about yourexperiences of what works well and what you would like to improve.They feel there is insufficient information about the services peoplewith rare neurological conditions receive, and need your help to fillthis gap.

You can take part in the RESULT survey (Review of Epidemiology andService in Rare Long Term Neurological Conditions) in a number of ways:

• Complete the survey online at www.result-survey.bham.ac.uk, or

• Call researcher Sonal Shah on 0121 414 8585

There is an October deadline, so if you would like to take part in the survey, don’t delay– the researchers are waiting to hear from you!



Fundraisers in action

Coast to coast by bikeRichard Dodds of Stockton-on-Teestravelled from coast-to-coast in style onhis motorbike riding from Scarboroughto Grange-over-Sands. The trek took 13hours and Richard raised £105 for MSAresearch. His friend, Peter Scott, wasdiagnosed with MSA in 2005. Peter andhis wife Helena would like to say a bigthank you to Richard.

British 10K RunTalya Gordon of London completed theBritish 10k run in July. Talya hadamazing support from friends andfamily and (with gift aid) raised over£2,800 for the Trust. Talya completedthe race in 59 minutes and wasaccompanied by her friend CarynAbrams (also pictured). Talya says,“I’m so pleased to have been able toraise money for the Trust. I’m veryaware of the condition as my mum wasdiagnosed with MSA in 2002”.

The Trust has again been regularly generously supported by the AedasCycle to Cannes charity challenge and in June, Nick Hanmer, ChiefExecutive of The Aedas Cycle to Cannes, presented the Trust with a chequefor £26,000. The annual event draws riders from the real estate industryand this year raised an amazing £172,000 for core charities. Plans arealready underway for the 2011 ride and Nick says they’re keen to reachthe £1 million mark for total money raised for their chosen charities. Ifyou’d like to know more about getting involved as a cyclist or a sponsor,Nick would love to hear from you! Contact him on [email protected].

Aedas Cycle to Cannes charity challenge

The boys on their bikes

Tayla Gordon and Caryn Abrams

Trust Support Group Leader and Trustee,

Karen Walker, receives the cheque

Left to right: Michael Evans (Trustee and 2008 rider to Cannes), C2C’s Nick Hanmer

and Terry Pawson (of Terry Pawson Architects)

BUPA 10K RunWendy and Les Robertson of theHASSRA Fylde Rambling Club inBlackpool travelled to London forthe Bupa London 10k run in May.HASSRA is the Sports and Social Clubof the Department for Work andPensions and the club has chosen theTrust as their charity of the year. Wendysays, “It was a glorious day and a greatway to see some of the sights ofLondon. The crowds were verysupportive, with lots of clapping,cheering and encouraging of runners.”They both agreed the hard trainingbefore the event was worth it, especiallyas they raised £150 in sponsorship forthe Trust.

So many people help the Trust by raising funds for our work. Their amazing

efforts make it possible for us to provide our services and fund research into

MSA. Here are a few of their stories, and a big thank you to everyone who

works so hard to support us.

Musical eveningAnna Ramsden’s concert group puton a musical event in Northallerton’sTown Hall earlier this year in memoryof her husband, Alan. They raisedover £1,700 and managed to raise theprofile of the Trust and MSA in theirlocal press.


Fundraisers in action


We are very grateful for all yourfundraising activities.

We would be grateful if any futurecheques be made payable to

‘Multiple System Atrophy Trust’

Paris MarathonDebbie Kingstonfrom Twickenham,Middlesex, says,“Unbelievable – Iwas in Paris for thewhole weekend,with no children, and meeting myNorwegian friend, Maiken, who Ihadn’t seen for four years. I was alsorunning the Paris marathon!” Debbie,who finished in 4hrs 32 minutes, chosethe Trust as her cause in support of afriend who has MSA. Debbie raised£1,200, and says “It felt so good tofinish, and our meal out that night wasespecially enjoyable with the glow of ajob well done.”

Left to right: Sophie, Holly, Kelly and Lucy. The adults (left to right) are Jacqui (Anne’s

daughter-in-law) first time 10k runner, Anne Troy, Scott Christie (her new son-in-law)

and Susan (her cousin) second time 10k runner.

Coniston swim

Hannah Young of Wargrave braved rain and freezing water to swim Cumbria’sLake Coniston in memory of her father-in-law, Alistair Young. Hannah says, “Aswe stripped off and greased up, swimmers were telling themselves and eachother that it would be warmer in the water than out (it was 14 degrees out andvery wet and windy). I got counted into the water. It was freezing. Screamswent out, ‘IT’S NOT WARMER IN THAN OUT!’.” Just over three hours later,Hannah finished the race seventh out of 12 women from a total of 39swimmers. As well as her race certificate, she was awarded the Arthur Ayres Trophy for endeavour and says, “I’mthrilled with the amount raised for the Trust which has topped £1,600, taking our efforts to well over £5,000”.

Great Scottish RunAnne Troy of Dunblane sent in thesephotos from a race held in memory ofMolly, a mother and grandmother.Anne says, “The girls did their 3k runon Saturday, 4th September. It was thefirst 3k event for Lucy and Sophie, butHolly and Kelly are now veterans atthis event. Scott had run his 10k in 56minutes before I had even started myhalf marathon, which took 2hrs 39

mins.” She reports that the weatherwas lovely for the supporters butextremely warm for the runners“Hence I had to walk most of the wayinstead of jog/run but I did manage torun across the finishing line.” Thegroup raised around £180 for theTrust. Anne says, “Well, that’s ourraces done at the moment until thewomen’s 10k next May. Now it’sback to training. Arrrrrrrgh!”



Christmas cards

Multiple System Atrophy Trust Christmas Card Order

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

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

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

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

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

Number of Total costpacks including postage

1 £4.80

2 £8.50

3 £12.00

4 £15.85

5 £19.70

6 £23.20

7 £28.30

8 £32.45

9 £35.95

10 £40.00

Trust Christmas Cards 2010Now Available to Order!

Thank you for your support!

Yes we’re planning for Christmas already - it really does seemto get earlier and earlier! We’re now taking orders for our

Christmas cards and here’s this year’s selection.

We have two new designs – Twelve Days and T’was the nightbefore Christmas - and the greeting inside reads “With Best

Wishes for Christmas and the New Year”. Each design isavailable in packs of 10 and cost £3.50 plus postage. The tablebelow shows how much the pack (or packs if buying more than

one) cost with postage.

The cards are a simple way to raise funds for the Trust and,importantly, help raise awareness of MSA as our name is

printed on the inside cover.

To order, please send us the slip below indicating which packs you would like, enclosing a cheque madepayable to “Multiple System Atrophy Trust” and post to:

Multiple System Atrophy Trust, Southbank House, Black Prince Road, London SE1 7SJ.

Twelve Days

T’was the Night Before Christmas

Either cut here or photocopy

Twelve Days

T’was the NightBefore Christmas

No. of packs


16

Information, Support, Education andResearch in Multiple System Atrophy.

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

� Information leaflets and magazine� Specialist nurses� Telephone help 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 FlemingProfessor Clare FowlerMs Darcy HareAlexander LoehnisGeoffrey MurrayHon Mrs Clare PowellEileen Lady Strathnaver OBELady Harriot Tennant MBEKaren Walker

Executive Directorand MSA News Editor:Nickie Roberts

All correspondence andenquiries to:Multiple System Atrophy TrustSouthbank HouseBlack Prince RoadLondon SE1 7SJTel: 020 7940 4666www.msaweb.co.uk

The Trust is financed entirely byvoluntary donations.Registered Charity Number 1137652Company Number 7302036

Designed,laidoutandprintedbyINQDesign.CallMartinon02077375775

Current MSA members 812Other patient members 34Relatives and carers 516Professionals 1422Others 190Total 2974

Membership Numbersas of August 2010

Become a regular donorDonations can be made to the Trust by setting up a monthly or annual direct debit.Regardless of size, all donations help us maintain and improve upon our services.Don’t forget to Gift Aid any donations to increase the value of the donationgenerously given.Become a fundraiserEvents such as coffee mornings, car boot sales and a wide variety of sponsorshipopportunities bring the Trust 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 MSA NewsSharing your experiences and tips with other members helps keep it your magazine.Form a local support groupLink with the Trust 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 Trust. This Gift Aid could raise the Trust’s income by as muchas £20,000 extra per year. We have Gift Aid forms available at the office.

Donate now!If you would like to make a donation to the Multiple System Atrophy Trust (formerlythe Sarah Matheson Trust) please complete the form below and send to the office. Ifyou are a UK taxpayer we can increase the value of your donation by 28% byreclaiming the tax as Gift Aid.

The Trust endeavours to ensure the accuracy of articles in MSA News.Please note, however, that personal views and

opinions expressed are not necessarily endorsed by the Trust.

Ways to support the Trustand help it grow

Next issue All articles to be received by the office by 31st November 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 ‘Multiple System Atrophy Trust’.

� I am a UK taxpayer and wish all gifts of money that I have made in the pastsix 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 ‘MULTIPLE SYSTEM ATROPHY TRUST’

Multiple System Atrophy TrustFounded by Sarah Matheson


msa news (issue 29)

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