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NEWSLETTER No 51 MAR-APR 2006 - CONSOLIDATED

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					                      RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY



              NEWSLETTER
    Issue No. 51                                                        March / April 2006

    DIARY of EVENTS                                    BRANCH TELEPHONE NUMBER
                                                       To contact the Rugby & District Branch
    TUESDAY 14 t h MARCH                               of the MS Society please phone
    s t a rt i ng a t 7 - 3 0   PM
                                                                   01788 813 043
                 Branch AGM
     at Hamilton House, Bilton Road, Rugby
                                                         R U GB Y S PR ING FAI R
                                                        Our participation at this year’s
        Due to a mix up regarding                       Spring Fair on 1st May could be
      booking the speaker, we regret                             in jeopardy.
        that it has been decided to
                                                                     See Page 3
        cancel the branch meeting
          planned for April 2006                        If we do not take part in the
                                                       Spring Fair, we will probably be
                                                       the only major charity in Rugby
                22 nd to 29 th APRIL
                                                        not represented at this event.
          MS AW ARENESS WEEK
     During MS W eek, two MS nurses
     will be on the MS Societ y website                     USEFUL TELEPHONE NUMBERS
          at www.mssociety.org.uk                       CHAIR
     answering any questions you may                    Mark Baff          Tel: 01788 844669
            like to ask about MS.                       TREASURER
     The nurses will be Andrew Russell, an              Keith Simpson      Tel: 01788 846781
      MS specialist nurse at York District              SECRETARY
     Hospital, and Rhona MacLean, an MS
                                                        Ann Burt           Tel: 01788 573804
      specialist nurse based at St Ja mes
          University Hospital, Leeds.                   SUPPORT (WELFARE) OFFICER
                                                        Position Vacant from 14.03.2006

    TUESDAY 9 t h MAY                                   INFORMATION OFFICER
    s t a rt i ng a t 7 - 3 0   PM                      Position Vacant from 14.03.2006

    Hamilton House, Bilton Road, Rugby                  SOCIAL SECRETARY
                                                        Helen Adams      Tel: 01788 811382
         FLOWER ARRANGING                               FUNDRAISING
                    with Ann Burt                       Margaret Ackroyd Tel: 01788 537841



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    o u r 2 0 0 6 B R AN C H A G M
    We held our 2006 AGM at Hamilton House on 14th March.
    The following Branch officials and committee members were elected –
       CHAIR                                MARK BAFF
       DEPUTY CHAIR                         Position Vacant
       TREASURER                            KEITH SIMPSON
       SECRETARY                            ANN BURT
       SUPPORT (WELFARE) OFFICER Position Vacant
       INFORMATION OFFICER                  Position Vacant
       SOCIAL SECRETARY                     HELEN ADAMS
       PUBLICITY                            BETTY TEIRE
       FUNDRAISER                           MARGARET ACKROYD
       Committee Members
       MARGARET MARTIN                 Margaret will initially take over responsibility for the Branch
                                       phone line, initial information and funding applications.
       ALISON MAKINS                   Alison will look after contact with members.
    As you see, there are currently 3 vacant posts on our committee.
    We urgently need replacements for Venice Edgar (Support) and Sandra Lumley (Information).
    Both these roles are rewarding and developmental, and they offer the opportunity to train and
    enhance existing skills and knowledge.
    Also, Mark Baff desperately needs a Deputy – preferably someone who is physically well – to
    enable him to carry out his role as our Chair.
    Please ring Mark or any Branch official for an informal chat if you would like to take on any of
    these roles – or if you know someone who may be interested.
    The committee and Branch members will welcome you with open arms.

    Venice and Sandra
    Where would we have been without them?
    On behalf of the members of Rugby & District Branch, your Newsletter Editor would like to thank
    Venice Edgar and Sandra Lumley for all their efforts on our behalf. Both ladies sadly left the
    committee at this year’s AGM.
    Venice was our Social Secretary for about 18 months, and she was then our Welfare Officer for
    almost 3 years. During this time she also supported her husband Steve in his role as Chair. She
    was the backbone of the committee, and kept them all on their toes. She attended meetings and
    events far and wide on our behalf, and returned with lots of useful ideas and information. She set
    up our ever-popular Drop-In Sessions, and she was instrumental in arranging the exercise
    classes and swimming classes. Venice will be sorely missed, but thankfully she has offered to
    remain a point of contact for the committee.
    Sandra Lumley was our Information Officer, and she also worked closely with Venice in Venice’s
    Welfare role. Her medical knowledge was put to good use, particularly when dealing with newly-
    diagnosed MS patients. She helped to put them at their ease while making sure they had the
    information and guidance that they needed. Sandra, too, will be greatly missed.
    Thank you both very much for all your hard work behind the scenes on our behalf.
    We hope to see you both as often as possible at future events.

    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY               NEWSLETTER ISSUE No. 51 MAR / APR 2006

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                                                                                                   Page 3
                      HELP !
                      In the previous Newsletter, I asked for unwanted ornaments or
                      unwanted gifts etc in readiness for the Spring Fair on 1st May, or to
                      sell at a Car Boot Sale. So far, only 2 people have donated items so,
                      as you can imagine, we do not have enough items to go ahead
                      with either event.
                      If you can offer any of the following, please contact me a.s.a.p.
                                                          Ornaments
                                              Unwanted gifts (no electrical items)
                                                     Bottles of wine/spirits
                                                             Books
                                              Jigsaw puzzles (no missing pieces!)
                                                              CDs
    I can arrange to collect them from you.
    I will also need help to run the Spring Fair stall and/or a Car Boot sale – either on the day itself or
    to prepare the goods in advance. If you can offer any help, please contact me to let me know.
    The proceeds of these events go into Branch funds, so we all have the chance to benefit from
    this.
    Margaret Ackroyd
    ( 01788 537 841

    SAINSBURY’S COLLECTION
    This event was our most profitable fundraiser last year. I have managed to secure 2 days for
    collections at Sainsbury’s this year – Friday 27th October and Saturday 28th October. Believe it
    or not, these were the only 2 collection days still available!
    We shall need as many volunteers as possible to help us to collect on behalf of the Branch. If I
    haven’t got enough collectors I will have to cancel. Any time you can offer on either day, from one
    hour upwards, will be very gratefully received. We will have chairs for you to sit on if needed.
    If you’ve never joined us on collection days before, you’ll be very welcome. We are always
    grateful for any help, from people with MS or their carers, friends and families.
    Feel free to give me a ring if you want more information.
    Margaret Ackroyd
    ( 01788 537 841

    GREETINGS!
    Steve Edgar has been given a selection of greetings cards by a work colleague (who used to run
    a corner shop) – Paul Smith at Blooms Garden Centre.
    Many thanks, Paul. This is a very useful donation, and I will try to sell the cards at the Rugby
    Spring Fair.
    If you know of any business that needs to get rid of some stock, please let me know – this could
    be a very useful source of income for our Branch funds.
    Margaret Ackroyd
    ( 01788 537 841


    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY               NEWSLETTER ISSUE No. 51 MAR / APR 2006

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                                                                                                  Page 4
                     DONATION from RUGBY CRAFT
                     ASSOCIATION
                     We have received a cheque for £250 from this Association. They nominated us
                     as one of two charities to benefit from the proceeds of their Craft Fair.
                     The Association was formed in 1984 to bring together local craft workers for
                     mutual support, and to explore outlets for their work.
                     Many thanks to Rugby Craft Association for thinking of us.
                     CHRISTM AS SNOWFLAKES APPEAL
                     Previously the Christmas Stars appeal.
                     We collected a total of £287.35 from the sale of Christmas Snowflakes last year.
                     Thank you to everyone who bought Snowflakes.
                     We should also like to thank the following businesses and organisations for
                     supporting the appeal:
                                    Brandon IT Learning Shop
                                    Brooke Chiropody – Paul Manning
                                    Crown House
                                    Gray Opticians – Phil Gregg
                                    Honeycombe Hairdressers
                                    Rugby IT Learning Shop
                                    The Bear, Bilton

    SHARE YOUR GOOD IDEAS
    Does anyone out there have any innovative ideas for fundraising? I’d be very pleased to hear
    from you. No matter how “different” your ideas are, they will all be considered, so don’t keep them
    to yourself. Sometimes the more unusual ideas turn out to be the best ones.
    Margaret Ackroyd
    ( 01788 537 841


    IS YOUR LOCAL ACCESSIBLE?
    Nearly half of British pubs made it difficult or impossible for disabled customers to pop in to their
    local for a pint, according to a new survey.
    An audit of more than 100 pubs and bars across the UK by the disability charity Leonard
    Cheshire found wheelchair users were unable to enter nearly one in six of the venues.
    And wheelchair users could only enter another quarter of the pubs with assistance.
    Other access hurdles faced during the survey included two-fifths of venues without an accessible
    toilet, and less than half with disabled parking spaces.
    However, nearly four in five of the charity’s auditors found staff helpful and welcoming.
    A spokesman for Leonard Cheshire said: “Pubs and bars are legally bound to provide an
    accessible service, and whilst some were very good, too often we found the definition of
    accessibility only stretched to providing a ramp for entry.”
    Public House? – a report into pubs and accessibility.
    http://campaigns.leonard-cheshire.org/page.php/research.html


    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY               NEWSLETTER ISSUE No. 51 MAR / APR 2006

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                                                                                                 Page 5
    From the MS Society Website
    FDA ADVIS ORY COMMITTEE R ECOMMENDS TYSABRI SHOU LD BE
    REINTRO DUCED
    An advisory committee to the US Food and Drug Administration (FDA) has unanimously
    recommended that Tysabri (natalizumab) should be reintroduced for the treatment of
    relapsing-remitting multiple sclerosis in the US. The FDA is expected to make its final
    decision by the end of March. It usually follows advisory committee recommendations.
    Tysabri was originally approved by the FDA in November 2004 for the treatment of MS, but its
    use was voluntarily suspended by Biogen Idec and Elan Pharmaceuticals in February 2005 after
    cases of the rare neurological disease progressive multifocal leukoencephalopathy (PML) were
    reported. The advisory committee’s recommendation stipulates that patients should be registered
    and monitored.
    Mike O’Donovan, chief executive of the MS Society, said: “We welcome the recommendation and
    very much hope Tysabri will soon be available to people living with MS in the UK.
    He added: “Recent trial results have shown the drug can not only reduce MS relapses or ‘attacks’
    significantly but also have a much greater impact on the progression of disability than other
    available treatments. Safety must, however, be a priority for both neurologists and patients and it
    is absolutely right for the committee to have made its recommendation conditional on careful
    monitoring to minimise the small risk which has been identified.”
    Before the drug could become a licensed treatment in the UK, it would need approval from the
    European Agency for the Evaluation of Medicinal Products. Once licensed, it would also be likely
    to be referred to NICE.
    The committee’s recommendations for approval in
    the US include:
    •    Tysabri being made available only to patients          MEMBERSHIP SUBSCRIPTIONS
         diagnosed with relapsing MS who have enrolled
         along with their physicians in a mandatory                  MISS IN G MEM BE RS
         registry programme
                                                             There are 20 people who were Branch
    •    the drug being given only at authorised infusion
         centres where the medical personnel have been
                                                             members last year and have not yet
         trained in its proper use and in the risks of PML   renewed their subscriptions for this year.
    •    Tysabri not being used in patients who have         If you are one of these people and you
         compromised immune systems or who are               have forgotten to renew, can you please
         taking other immunosuppressive or
         immunomodulatory agents, with the possible
                                                             do so as soon as possible.
         exception of periodic steroids to treat relapses
                                                             If you don’t want to renew, can you
    •    prescribing information carrying a warning about    please let Ann Burt know a.s.a.p. as she
         PML
                                                             is waiting to send off a membership
    •    before starting treatment, the physician must
         complete a ‘patient checklist’ to ensure that the   return to the MS National Centre.
         patient meets all requirements for use of
         Tysabri and, before to each infusion, the patient
                                                             You can contact Ann on 01788 573 804
         and infusion nurse complete a checklist to
         screen for symptoms suggestive of PML
                                                             Her address is
    The advisory committee did not reach a                   16 Balcombe Road, Rugby, CV22 5HY
    consensus on whether Tysabri should be
    used as a ‘first-line’ therapy or whether a              Many thanks
    patient must first be on another disease-
    modifying therapy which proved ineffective.
     Sour c e : M SS We bs it e – 0 9. 0 3 . 2 0 0 6



    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY                    NEWSLETTER ISSUE No. 51 MAR / APR 2006

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    our TENERIFE HOLIDAY                             by Steve and Venice Edgar
    Hello everyone, we thought we would share some of our experiences following our week’s holiday in
    Tenerife.
    We decided we would like to have a week’s holiday in January to recharge the batteries in the sun and the
    Canary Isles were highly recommended. We went to the Co-op travel agents and spent two hours finding
    the right deal at the right price, most of that time being spent finding out details about accessibility, which
    is not the easiest task. Anyway, to try and cut out the boring stuff, we chose a self-catering hotel in ‘Playa
    de las Americas’ on Tenerife and
    awaited the big day. We flew from
    Birmingham airport and the wheelchair
    transfer to the plane went very smoothly,
    first on and a front seat (pity it wasn’t a
    bus because we couldn’t see out of the
    front window). Anyhow, we really
    enjoyed the flight which was in full
    daylight – we were able to plot the route
    down over France, the Bay of Biscay
    and Portugal before a smooth touchdown
    at Tenerife south airport. The coach ride
    to our hotel was enjoyable and gave us
    our first sights of the island and of Playa
    de las Americas itself.
    The resort of Playa de las Americas only
    existed from the 1960s onwards, and
    was built specifically for its sun and                                            Playa de las Americas
    nightlife. It is basically an ever-
    expanding urban sprawl. I think perhaps
    there is no phrase in Spanish for
    ‘Planning Regulations’. Still we were
    warned that in the Summer this was a
    young person’s resort (so just right for
    us then!), but at this time of year things
    would be quieter, and so it proved.
    Eating out is very good with a wide
    variety of restaurants and bars serving
    any type of food you could possibly
    want - the only annoying aspect being
    the mild harassment from touts on the
    pavement trying to get you into their
    place.
    We had hired a car at the time of
    booking the holiday and collected it as arranged with no trouble at all. We had a Skoda Fabia, which was a
    very nice car to drive. This was not the Skoda of old, subject of a multitude of SKIP jokes. Driving on the
    right in Tenerife proved to be a challenge and even Steve had to admit to one or two minor traffic errors
    such as driving the wrong way round a junction and crossing solid white lines before we knew what they
    were for. We wondered why the locals pip their horns all the time!
    Although driving in town was difficult, driving out on the open road to the mountains was real fun. Steve
    had to do all the driving because we couldn’t find a hire car with hand controls, rear hoist, roof box and
    lightened steering. Apparently these were all already booked out – Err Um?
                                                                                       Continued on next page


    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY                     NEWSLETTER ISSUE No. 51 MAR / APR 2006

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    our TENERIFE HOLIDAY                                        Continued from previous page
    Perhaps the highlight of the holiday was a visit to Mount Teidi, the dormant volcano in the middle of the
    island. The journey from sea level along the mountain roads takes you through four climate zones to the
    base of a cable car, which then takes you up the final leg to just below the summit at 12,000 feet. On the
    drive up at this time of year you pass
    through the clouds and continue
    upward above them, looking down as
    far as the eye can see on a cotton wool
    sea of cloud – amazing! The landscape
    around Mt Teidi is volcanic and the
    area has been used by filmmakers for
    films such as Planet of the Apes.
    Another highlight of the holiday was a
    trip on a catamaran out into the bay
    around the resort to view Pilot Whales,
    which we found after about one and a
    half hour’s searching. The trip
    included a free bar and buffet, and
    Venice was able to swim off the back
    of the boat.
    Apart from the usual problem finding
    public toilets (accessible or otherwise),
    it was reasonably easy to get around on
    the island – and it must be said the
    taxis were very good and very                                                             Mount Teidi
    reasonably priced.
    All in all a very good holiday but for us Playa de las Americas should be avoided, especially in the summer
    if you want a quiet holiday.
    All the best                                      Editor Did you know that Mount Teidi on Tenerife
                                                              is, in fact, the highest point in Spain?
    Steve and Venice
    DISABILITY NEEDS IN SPAIN
    ADAPTED VEHICLE and DISABLED EQUIPMENT HIRE
    Editor     I have received the following information from Nick Gore of the Worthing and District Branch.
    If you would like to go abroad to Southern Spain but are restricted because of special equipment
    needs, then you may be interested in the following:
    One of our members has recently been to Spain (near Malaga) with his wife and used the
    services of two businesses to provide for their disability needs.
    Steve Hughes hires out disabled friendly vehicles, which will take a seated wheelchair passenger
    and carry four passengers (including the driver). Our member found Steve to be very kind and
    considerate, and he can be contacted on his e-mail address freeweelin01@msn.com
    If you need equipment such as a mobile hoist, air mattress, commode, etc., then brothers John
    and James will hire these things out and bring them to your accommodation.
    Their UK phone number is 0845 644 2892
    or contact them direct in Spain on (00 34 from the UK) 952 447764
    For further details, have a look at their website which is www.mobilityabroad.com


    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY                   NEWSLETTER ISSUE No. 51 MAR / APR 2006

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    MS EVENTS
    22nd and 23rd APRIL 2006
    MS SOCIETY CONVENTION – MS LIFE
    At the G-Mex in Manchester
    A convention dedicated to people affected by multiple sclerosis.
    For further information visit www.msconvention.org.uk
    or phone Derya Nielsen from Marketing Manchester – who are handling accommodation
    requirements – on 0161 238 4563
    E V E NT : L IV IN G W IT H MS INF O R MAT IO N D AY
    Date: 20 May 2006
    Location: Sheffield Park Hotel, Sheffield
    These are enjoyable and informative information days for people with MS and their carers held in the Society's
    Regions. You will learn about living with MS and also have the opportunity to share information and experiences with
    other people affected by MS.
    The day includes sessions on:
    • The facts about MS by a leading Neurologist
    • Fatigue in MS
    • Carers Caring for themselves
    • Cognitive and psychological problems for people affected by MS
    • Mobility & Seating
    All by leading local specialists.
    Please note: these sessions may be subject to change; please check individual booking forms for details.
    There is no fee for this event.
    To download a booking form visit http://www.mssociety.org.uk/document.rm?id=1142
    E V E NT : L IV IN G W IT H MS INF O R MAT IO N D AY
    Date: 8 July 2006
                                                                                             For further information
    Location: Hampshire Centre Court, Basingstoke
                                                                                             on the Information Days
    These are enjoyable and informative information days for people with MS and              or the Living with PPMS
    their carers held in the Society's Regions. You will learn about living with MS and
    also have the opportunity to share information and experiences with other people         event, please contact:
    affected by MS.                                                                          Liane Wimhurst
    The day includes sessions on:                                                            MS Society
    • The facts about MS by a leading Neurologist                                            372 Edgware Road
    • Issues concerning continence
                                                                                             Cricklewood
    • The benefits of physiotherapy
                                                                                             London
    • Memory help and problem solving
    • Help for carers                                                                        NW2 6ND
    All by leading local specialists.                                                        Tel: 020 8438 0837
    Please note: these sessions may be subject to change; please check individual
    booking forms for details.
    There is no fee for this day.
    To download a booking form visit http://www.mssociety.org.uk/document.rm?id=1143
    E V E NT : L IV IN G W IT H P R IMAR Y P R O G R E S S IV E MS
    Date: 30 September 2006
    Location: The Loop Centre, Exeter
    We realise that it is often difficult for people with primary progressive MS to find useful and accurate information that
    they can relate to, and this day aims to bridge that gap.
    With a presentation by a neurologist and sessions on physiotherapy, continence and sexual health, the day also
    offers an opportunity to share information and experiences with other people affected by PPMS.
    To download a booking form visit http://www.mssociety.org.uk/document.rm?id=1144

    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY                          NEWSLETTER ISSUE No. 51 MAR / APR 2006

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                                                                                          Page 9
    looking back – looking forward

                                                      Those of us who went to our Branch
                                                      Christmas Dinner last December had a
                                                      really good evening out. It was a chance to
                                                      relax and have a bit of fun – we all enjoyed
                                                      it tremendously.
                                                      Our Social Secretary, Helen, is hoping to
                                                      arrange a Summer Dinner; so why don’t you
                                                      come along and join us – we are sure you
                                                      will enjoy it. Bring along your relatives,
                                                      friends or carers – the more the merrier.
                                                      There is no point in Helen arranging these
                                                      events if members don’t support them.

                                                      If you have any thoughts on a suitable venue
                                                      for our Summer Dinner, or would like any
                                                      further information on our social gatherings,
                 Well, I don’t mind if I do, Steve    you can phone Helen on 01788 811 382




                                                                     Nor do we




                                                                   Pictures kindly taken by Dorothy

    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY          NEWSLETTER ISSUE No. 51 MAR / APR 2006

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    BRANCH MEETINGS REVIEW                             PROTECT YOUR BLUE BADGE
    We had about a dozen members at our                FROM THEFT
    January Pub Meet, including a new member           Did you know that over 6,000 Blue Badges
    who lives in one of the villages. Welcome to       were stolen in 2004 – and that this number is
    Carol and her driver – we hope you had a good      on the increase?
    time with us.                                      Your Editor has been informed by Gowrings
    The Pub Meet was at The Bear in Bilton. This       Mobility that they have introduced a simple, yet
    is a very popular pub, and it will undoubtedly     innovative device which it is claimed safeguards
    become even more popular now that it has           your Blue Badge from opportunist theft.
    been featured in the press and on Central TV.      The ‘Blue Badge Protector’ is a steel case into
                                                       which you slide your Blue Badge. It is then locked
    Our February meeting at Hamilton House was         to your steering wheel. A ‘Double’ version is also
    made up mainly of committee members – six of       available which will hold both your Blue Badge
    them, and just two non-committee members.          and the Time of Arrival Clock.
    Come on members; tell me what you want from        Prices start at around £18 and you can obtain
    Branch meetings. This was supposed to be our       more information or place an order by
    first social gathering of the year – a chance to   phoning 0845 608 8020
    chat, and share information and ideas with your
    committee. But where were you?                     UK ROAD ATLAS FOR THE
                                     Helen Adams
                                                       DISABLED MOTORIST
                                  ( 01788 811 382      What is said to be a unique UK road atlas is
                                                       now available from Gowrings Mobility. It is
                                                       claimed that the atlas details everything a
    and finall y    .....                              disabled motorist requires for a smooth
                                                       journey – Blue Badge parking in city centres,
                     MONEY                             accessible petrol stations, toilets and beaches
                                                       as well as accommodation and other useful
                 It can buy a House                    information.
                 But not a Home                        For further details, phone 0845 608 8020
                 It can buy a Bed
                 But not Sleep                            Copy deadline for the next Newsletter is
                 It can buy a Clock                                  14th APRIL 2006
                 But not Time                            E-mail: mike_ackroyd_rugby@lineone.net
                 It can buy a Book                                    ( 01788 537 841
                 But not Knowledge
                 It can buy a Position                 This MS Newsletter is published by the
                 But not Respect                       Rugby & District Branch of the Multiple
                                                       Sclerosis Society. We give regular
                 It can buy Medicine
                                                       updates about MS and what is
                 But not Health
                                                       happening locally in the MS community.
                 It can buy Blood
                 But not Life                          Editor         Mike Ackroyd
                                                       All the views expressed in this publication
                                                       are individual and not necessarily the views
    Editor Many thanks to Kevin Ellery for
                                                       or policy of the charity and its supporters.
           sending me these thoughts.
                                                       Charity number 207495000


    RUGBY and DISTRICT MULTIPLE SCLEROSIS SOCIETY            NEWSLETTER ISSUE No. 51 MAR / APR 2006

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