Annual Review 2005-2006 - MYOSITIS

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Annual Review 2005-2006 - MYOSITIS Powered By Docstoc
                                       Support Group
                                       146 Newtown Road, Woolston, Southampton, SO19 9HR
                                       Telephone: 023 8044 9708 Fax: 023 8039 6402
                                       E-mail: Website:

Dermatomyositis • Polymyositis • Inclusion Body Myositis • Juvenile Dermatomyositis

Chairman’s Report                                                        Contents
It is never a problem to report on a past year for our little charity.   • Chairman’s Report
There has always been much activity in every aspect of charity
life among our committee, members, family and friends. I feel            • Executive Committee
that we should look back and take stock of our achievements not            2005-2006
only of this year but recall the past 21 years. I truly believe we
are now coming of age.                                                   • Charity Update
In the past we have supported projects into Myositis in general          • Research
as well as specific projects into dermatomyositis and                    • Fundraising
polymyositis. More recently we have supported juvenile
dermatomyositis. There is a much greater understanding now of            • Financial Report &
all forms of Myositis than there was 21 years ago. Once inclusion
body myositis was deemed to be very rare and generated little              Balance Sheet
interest. However, it is now realised that it is no rarer than the
other forms of Myositis. There have been many research projects
over the years' specific to IBM mainly in America. It is now our
duty to pursue a more urgent approach not only in the                    Executive Committee
understanding of the disease but to improve the quality of life for      2004-2005
all Myositis patients. There is much excitement and enthusiasm           Chairman
amongst those in the research field and I hope that our lobbying
and talking to doctors and eagerness to support research will            Mr Les Oakley
initiate more avenues for all forms of Myositis.                         General Secretary
We have also over the past 21 years raised over half a million           Miss Paula Oakley
pounds. This is actually a small drop in the ocean as the cost of        Honorary Treasurer
large scale research exceeds our realm. However, we feel we
                                                                         Mrs Jo Goode
have spent charity money wisely. Our philosophy of funding pilot
projects to tempt larger organisations to carrying forward the           Committee Members
work has been fruitful. The SELAM trial and the Fellowship Award         Mr Tony Hindle
to Dr Hector Chinoy are clear examples of this.
                                                                         Mrs Sue Hindle
The Myositis medical community is growing and the willingness            Mrs Elaine Aubrey
of these doctors and scientists to collaborate is ensuring that
focused and sound investigations are moving forward at pace.             Mrs Jenny Fenton
This year we have had the pleasure to offer financial assistance         Mr Rob Fenton
to Dr Lucy Wedderburn to continue the work of muscle biopsy
                                                                         Ms Catherine Risley
scoring and Professor David Isenberg to create a computer data-
base to intergrate the (MITAX) Myositis intention to treat activity

index and the (MYODAM) Myositis damage                    both have the ability to multi task and make
index in Myositis treatment trials.                       hard work look easy. It is also with much
                                                          sadness to recall the death of Elaine Aubrey
We have been in discussion with Professor                 earlier this year. The trustee meetings will not be
David Scott, Dr Robert Cooper, Dr Michael Rose            the same without the fun factor and enthusiasm
and Dr Olivier Harari to initiate future projects.        she always provided.

Professor Scott's                                         Our appreciation and thanks also go to Janet
lecture to his                                            Horton for Welfare Advice and to Bridget
peers last                                                Kallouski our auditor. Both have given their time
November                                                  at no cost to the charity for which we are
highlighted the                                           extremely grateful.
importance of
our charity in the                                        The transformation of the Charity since its
medical field                                             humble beginnings of a borrowed type writer
and the recent                                            and £500 funds to our standing today results
biopsy meeting in March clearly demonstrated              from the commitment, enthusiasm and support
how our assistance has ensured international              of all of you - the members. This year in
collaborations to flourish. An invitation from the        particular special appreciation goes to Saskia
Arthritis and Musculoskeletal Alliance to assist in       Wells, Elizabeth Kerr, Jean Dunn and Catherine
the consultation for updating standards of care           Sutcliffe, who independently set up fundraising
for connective tissue diseases has been                   activities that raised a considerable amount of
accepted by ourselves ensuring the Myositis               money. Frances Ferguson and her sister Marilyn
agenda has a firm place on the shaping of                 sell a large amount of our Christmas cards each
medical policies.                                         year with Marilyn raising funds from her craft
                                                          shop. I also offer my grateful thanks to all of you
In true tradition my roll call of thanks is               for your personal donations. Over the past years
extended to all the trustees especially our               our income has been generously enhanced by
newest recruit, Catherine Risley who is currently         legacies and monies in memoriam. However, in
undertaking the laborious task of updating our            closing we should not become complacent.
literature. Tony and Sue Hindle are much                  There are several medical projects in the pipe
respected for their sound judgement at                    line and I want to be able to say YES to their
meetings and also for muscle in relaying books            funding. It is essential that our fundraising
across the counties for the charity book stall. Jo        increases. With our new ideas and ability to
Goode has continued her professionalism in her            support your fundraising efforts I hope the next
role as honorary treasurer which is a position of         year's fundraising gathers pace with momentum
endless paper work! Retiring this year are Jenny          and one day the diseases will be a distant
and Rob Fenton who have been responsible for              memory!
the much appreciated bulletin board and
website. Irene and Paula have shown again they            Les Oakley

The Myositis Support Group Newsletter reached             saying how much they look forward to receiving
its 60th issue and is an invaluable resource for          the Newsletter and how enjoyable and useful the
many of our members. Even some of the doctors             Newsletter is. Compilation of the Newsletter is a
have been known to tear out and keep the                  time consuming task so appreciation goes to all
research information! This year rather than just          of you who have written in with articles, product
reporting on the charity's research and                   recommendations and feedback as well as
fundraising we have included many additional              Professor Isenberg (Newsletter 60), Dr Cooper
articles about other organisations, campaigns,            (Newsletter 59) and Dr Wedderburn (Newsletter
companies that provide products that our                  60) for their research articles. We plan to continue
members may find of use, and details of scientific        with this format and send out smaller Flyers in
reports on Myositis. Many letters are received            between Newsletters when appropriate.

Charity Update
Mini Conference
'Living Well with Myositis' was the theme of our        Professor David Scott and a research update
mini conference held last July in Eastleigh near        was given by Dr Lucy Wedderburn who
Southampton. The aim of the meeting was to              summarised the work of the inaugural juvenile
provide talks with a general feel and allow ample       dermatomyositis biopsy consensus meeting and
time for an interactive question and answer             concluded how their preliminary findings in JDM
session and extra time during the breaks to             could benefit all forms of Myositis.
meet each other. The meeting was chaired by

      Prof David Scott                Dr Lucy Wedderburn                   Dr Selwyn Richards

Dr Selwyn Richards spoke on the benefits of exercise and Wendy Burley, a nutritional therapist
detailed foods that may improve well being. Dr Patrick Gordon from Kings College joined us for the
afternoon question and answer session. A heart warming presentation was given by Saskia Wells
who spoke about her mother who had Myositis and who sadly passed away. Saskia spoke of her
planned fundraising event, an organised open challenge cycle ride. A summary of the day was
published in Newsletter 59.

           Wendy Burley                  Dr Patrick Gordon                     Saskia Wells

    'Thank you so much for once again providing us with an extremely useful and helpful time. We
  appreciate how much hard work goes into the planning and carrying out of such a day, and we are
                                most grateful to you for doing this.'

                                                                         'I really enjoyed the day and
   'We went home                                                         actually meeting people with
    having learnt                                                         Myositis for the first time. I
 something new and                                                      think you are all wonderful for
 were able to share                                                     doing so much to help us all. I
  our own problems                                                            found the talks most
   and successes.'                                                                 interesting.'

Delving into past Newsletters and Annual                  Thankfully, recently, there has been real
Reports reveals our progress. Newsletter 23               enthusiasm about research and medical
back in 1992 reported that the Myositis Support           involvement is growing. There are networks of
Group Funded Fellowship advertised in the                 doctors and scientists collaborating across the
British Medical Journal had generated little              UK and internationally. Each has their own
interest amongst scientists and doctors. There            ideas on how Myositis research should be
were 8 researchers who initially expressed an             conducted. As a charity we've had to focus the
interest but none pursued it further.                     needs of our members within this surge of
At the time we enquired why the Fellowship was
not of interest. The responses were; “On further          Our available funds, although
reflection I believe that our work is not                 commendable for our charity size,
sufficiently close to the issue of dermatomyositis        mean we cannot meet the full
or polymyositis to be of direct interest or help at       costs of larger research projects.
this time” and “The research I had in mind had            An example of this is the ARC
its emphasis more on muscular dystrophies than            funded SELAM trial which has cost
polymyositis”.                                            in excess of our financial capability.
                                                          In the 21 years of the Myositis Support Group
                    Myositis research remained            we have raised just over £500,000. We have
                    near to non-existent for a few        therefore continued to fund foundation work
                    more years and in Newsletter          required before larger funding bodies will
                    26 Chairman Les Oakley                develop the work. This year we have continued
                    wrote, “Our predicament at            financial assistance for the implementation of
                    present is not only do we             the MITAX and MYODAM indices and a second
                    need a research doctor, but           JDM biopsy meeting. Last year we supported
where can this work be done. We have the                  the Genetic work and are pleased to continue
money for the pilot but not the plane!” Indeed he         support of this work in a non-financial manner.
reiterates his concern in his Chairman's Report of        Likewise our non-financial support of the ARC
1995 that there were still no takers for the post.        funded SELAM trial has continued.

Second Juvenile
Biopsy Consensus
Meeting: March
2006                                                      This was the second meeting of the group of
                                                          international histopathology experts, now called
The Myositis Support Group provided financial             the International Consensus Group on JDM
assistance to this meeting which was held in              Biopsy, to generate a scoring system for
March 2006 and hosted by the Juvenile                     changes on JDM biopsies.
Dermatomyositis Research Centre, ICH, in
collaboration with the Juvenile Dermatomyositis           In summary this was a highly successful and
Research Group, UK at the Institute of Child              valuable meeting and the primary goals of
Health and Institute of Neurology, UCL. The               finalizing a score tool and agreeing to publish
meeting was held over three days.                         this work were achieved.

Myositis Genetic                                           ARC Fellowship and he along with Dr Cooper
                                                           frequently acknowledge and are grateful to the
                                                           Myositis Support Group for financially supporting
Research                                                   the work in its earlier days. A database of over
                                                           400 blood samples and clinical records has now
                        The study of                       been collected by the Manchester based team.
                        dermatomyositis and                Myositis Support Group members were invited to
                        polymyositis genetics has          support this work by sending a sample of their
                        continued with momentum.           blood and clinical details to the team. Dr Cooper
                        Dr Cooper and Dr Chinoy            and Dr Chinoy have furthered
                        have continued to present          their collaborations
                        their work at international        internationally and with JDM
                        conferences and have               teams here in the UK ensuring
                        recently published some of         their collection of samples
their findings in the journal, Arthritis Research          retains its status as one of the
and Therapy. Dr Chinoy is now funded by an                 largest for Myositis studies.

                                                           polymyositis and dermatomyositis and without
SELAM Trial                                                its success (in terms of recruitment) further such
                                                           trials will not be deemed viable. As a Support
                                                           Group we have supported (non-financially) the
                 We mentioned in our annual
                                                           SELAM trial by promoting it to our members and
                 review last year that recruitment
                                                           have urged our members to enquire about their
                 to the SELAM trial was about to
                                                           suitability to take part. We have offered assistance
                 be wound up. However, due to
                                                           with travel costs etc., if the only reason for
                 the determination for this trial to
                                                           holding back is potential financial hardship.
                 succeed by the doctors (in
                 centres around the UK) a 12-
                                                           Overall, if a conclusive answer regarding
                 month time extension until
                                                           combination therapy of steroids, methotrexate
December 06 was granted by the ARC to
                                                           and ciclosporin cannot be fully statistically
continue the project. Beverly White was
                                                           resolved, valuable information will still have been
appointed as the new clinical trial manager and
                                                           gained. Therefore the doctors and coordinators
she is determined to find the remaining
                                                           involved in the SELAM trial wish to thank those
participants required to make this trial a
                                                           who put themselves forward
success. The SELAM trial is to date the only
                                                           for the trial and those who
large scale randomised treatment trial into
                                                           were able to take part.

 Financial Research Grants 2005-2006
 Over the past year the Myositis Support Group has awarded financial assistance to the following

 • £18,360 to Dr Lucy Wedderburn of the Institute of Child Health (Great Ormond Street Hospital)
     for sponsorship of a second International Juvenile Dermatomyositis Biopsy Consensus Meeting.
 •   £14,023 to Dr Lucy Wedderburn of the Institute of Child Health (Great Ormond Street Hospital)
     for a research technician.
 •   £15,000 to Professor David Isenberg University College London for the design of a computer
     programme to implement the MITAX and MYODAM indices developed by the IMOACG

Exactly when the Myositis Bookstall became a            the stall has been down to the dedication of Les
feature outside Chairman Les Oakley's business          and his colleagues who have relentlessly 'put
is difficult to pin-point. Many will say it has         the books out'. The Myositis Bookstall is now
always been there. The first entry of money             well known in the locality and many avid readers
being received by the Support Group from the            travel miles to visit it. However, the Bookstall is
stall can be traced back to the Treasurers Report       only as good as its books, so it is without
of 1990, where it generated a grand total of            precedent that all our donors should be
£220.40. This sum was nothing to grumble at             thanked. These include many of Les's customers
considering the total income for the year was           and Myositis Support Group members; Diane
£9056. Les knew then that the Bookstall would           and Brian Hird, Jenny and Rob Fenton, Gordon
be a worthwhile fundraiser for the Group. This          and Kate Featherstone, Tony and Sue Hindle,
year the Bookstall raised £3700 (12% of our             and Alan and Jane Oakley. Fortunately, visitors
income) and over the years a total in excess of         to the Bookstall also bring books back for resale
£20,000 has been generated. The success of              for many are keen to help us.

Members Independent
Fundraising Events
This year's Fundraising Activities by members
have again been varied and included cycle rides,
pantomimes, coffee mornings, charity days, craft
demonstrations, after dinner speeches, car boot
sales, cake sales and produce sales. All these
efforts were greatly appreciated and contributed
to the financial income which allows the Support
Group to continue to fund research.

We received many private donations and were
able to claim back nearly £2198 through the Gift
Aid scheme. The Myositis Support Group would
not be able to make the commitments to research           Saskia Wells during her Cuban Cycle Ride

projects if it were not for the
donations received. We are very
appreciative for the many private
donations that are sent in with the
simple message 'please put
towards funds!' and donations that
are sent in lieu of birthday,
anniversary and Christmas
presents as well as those in
memory of a lost loved one.

                                              Jean Dunn & Catherine Sutcliffe’s Charity Day

                                      Lane End Players Pantomime

London Marathon, Grand Summer
Draw and Christmas Cards
              Frank Littler and Maggie Pearson         private donators who gave prizes for the draw.
              ran on behalf of the Myositis            Profit on Christmas Cards was increased this year
              Support Group in the Flora               as we were able to clear all our stock of previous
              London Marathon in April 2005.           years cards. A profit of £4011 was achieved.
              Frank completed the 26-mile run in
3 hours 50 minutes and Maggie completed her            The Christmas Cards, London Marathon and
marathon in 5 hours 56 minutes. Their efforts          Grand Summer Draw are activities easy to support
helped the Support                                     and the combined income generated from them is
Group raise £2149.                                     invaluable. We reported last year of our concern
The Grand Summer                                       that support for these activities were in slight
Draw raised a profit of                                decline despite a growth in membership. We have
£1122. Draw tickets                                    promoted these fundraisers
were sold by                                           to our membership as it is
members and                                            crucial that these activities
supporters. Our                                        are supported to provide a
appreciation once                                      steady income for the
again goes to Ashton                                   Group. This year a
Products, Draper                                       combined income of £7282
Tools, and other                                       was achieved.

Financial Report & Balance Sheet
The income of the Myositis Support Group for     Expenditure
the year ending 31 March 2006 was the result     2005-2006
of fundraising and donations (76%),
reclaimed money on donations through the
gift aid scheme (7%) and bank interest (17%).
No income was received from the
government, pharmaceutical industries or
national lottery. Of our expenditure, 64% were
financial grants to Dr Lucy Wedderburn. We       Income
also awarded £15,000 to Professor David          2005-2006
Isenberg although payment of this award has
not been made in this financial year and will
only be made once Professor Isenberg is
satisfied with the computerised myositis
assessment tools. With new research projects
on the horizon and to keep membership (to
UK members) free of charge we must
maintain our financial strength.

Statement of Income & Expenditure for the
Year Ended 31st March 2006
                                                     Summary of Account
                                                          b/f 31st March
                                                          2005                               142,286
                                                          Add income                          35,111
                                                          Less expenditure                    50,866
                                                          Balance 31st March 2006            126,531

                                                     Represented by:
                                                         Represented by:
                                                         CAF Gold Account                    112,707
                                                         CAF High Interest Cheque Account      7,380
                                                          CAF Gold Account                    112,707
                                                         Lloyds Cheque Account                 3,977
                                                          CAF High Interest Cheque Account      7,380
                                                         Cash in Hand                            269
                                                          Lloyds Cheque Account                 3,977
                                                         Sundry Debtors                        2,198
                                                          Cash in Hand                            269
                                                          Sundry Debtors                        2,198

                                                     Auditor’s Statement
                                                      In connection with the examination, no
                                                      matter has come to my attention and in my
                                                      opinion the Financial Statement gives a true
                                                      and fair view of the state of affairs of the
                                                      Myositis Support Group at 31st March 2006
                                                      and that Income and Expenditure during
                                                      the year have been properly prepared.
                                                      B Kalloushi, Independent Financial
                                                      Examiner, 6 Linden Road, Muswell Hill,
                                                      London, N10 3DH.


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