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The newsletter for our supporters                Summer 2007




                            The Big Push pushes off on page 4

Tel: 020 7720 8055           Web: www.muscular-dystrophy.org
 Welcome to the new look Campaign. We may have changed the size but inside you
 will still find stories and features about the valuable work your generous support has
 helped us to fund over the past six months. The new size is cheaper to produce and
 send and we hope you will find the whole newsletter easier to read.
    Turn to page 6 now to read about the research that your donations help make
 happen in our research update, this includes details of the
 first ever Young muscle Scientists Workshop. There is also
 news of clinical trials taking place in the UK in Alex Jordan’s
 story on page 8.
    Inside there is lots of good news, new and regular events
 updates and a unique and personal perspective on
 fundraising for the Sahara Trek given by guest contributor
 Katie Bizzey, who tells us about what motivates her to
 fundraise on page 9.
    Finally I’d like to once again say thank you for all your
 support, your donations are what make all the things you
 read about in Campaign possible.

 Thank You




 Sue Barker mBe, President, muscular Dystrophy campaign



Rowing novices take to the water
In may four brave Rolls Royce        We underwent extensive
workers rowed the entire          training and coaching to help
caledonian canal, from Fort       us prepare for the event. It
William to Inverness, in aid of   was a lot of commitment as
muscular Dystrophy                we all knew it would test us to
campaign. Richard                 the limit.”
Henderson, Bill mcDade, Alan         The team of rowers dubbed
mcDonald and Dougie latta         ‘4inarow’ decided to support
took on the 60 mile rowing        the charity because               charity through several
challenge in two days. They       lanarkshire Branch chair Jim      fundraising events over the
were short on experience but      o’Hagan, who also works at        last few years. This will be
big on enthusiasm:                Rolls Royce has a son, Sean,      the highest sum so far; they
   “We had never been in a        who has Duchenne muscular         exceeded their £5,000
boat before let alone taken on    dystrophy. The workforce          target and are now aiming
this monster challenge!           there has supported the           for £10,000.


2 To support us call 020 7720 8055
                                                                  News

The prospect of a daily
pill for Duchenne
In April both the Times and the BBc featured stories on
research published in the science journal Nature, which
has promising results for some forms of Duchenne
muscular dystrophy. The drug, PTc124, is in trial stage
at the moment and has been developed in the form of
a daily pill.
   muscular Dystrophy campaign’s Director of
Research, Dr. marita Pohlschmidt, said “The findings
described in the Nature article are encouraging,
particularly in the light of the clinical studies which are
being carried out in the United States.”




                                                                                                 images courtesy of morgue file
   “This drug appears to have the potential to become a
treatment in the longer term for some people with
Duchenne muscular dystrophy. The muscular
Dystrophy campaign is looking forward to the
publication of the full results of these clinical trials so
that we can see more clearly what the prospects and
possible timescales are for treatment.”


 5 steps to defeat muscle disease                             The muscular Dystrophy
                                                              campaign is urging all UK
 – The Manifesto for Muscle                                   politicians to pledge support
                                                              for the charities manifesto for
                                                              muscle. The manifesto calls for
                                                              radical improvements in care,
                                                              research and treatment of
                                                              neuromuscular conditions. It is
                                                              an urgent call to action to
                                                              politicians, that aims to make a
                                                              difference to the lives of
                                                              people living with muscle
                                                              disease. The manifesto was
                                                              sent to candidates for Scottish
                                                              Parliament and Welsh
                                                              assembly prior to the elections
                                                              and will eventually be sent to
                                                              all UK politicians.


                                                                www.muscular-dystrophy.org 
               Feature

           You can get behind…




So what is The Big Push?
The Big Push is a national awareness week that runs from 15 to 22 September, it will highlight
our work fighting muscle disease and raise much needed income. We will be pushing our
message on all fronts including a week of campaigning activity, research news and, of course,
the vital fundraising on which all the work of the muscular Dystrophy campaign depends.
  So why is it called The Big Push? We want to push the issues that matter to people with
muscle disease on all fronts. So The Big Push will be a major push in campaigning for better
services and will raise the funds necessary to improve our research and care programme. It is
The Big Push to improve awareness of muscle disease across the UK. The Big Push wants to
highlight the need for more research and better specialist care for people with muscle disease.
You can help us by taking part.

Planned Events                       What are you going to push?
There are already many               When it comes to getting involved you are limited only by
exciting events planned in           your imagination…
support of The Big Push,             A pumpkin push...
                                                                   Push a friend along...
including everything from
diving with sharks to abseiling,
from a rock night to an
aerobathon. These events are
happening throughout the UK
so no matter who you are or
where you are you can help the
fight against muscle disease by
getting behind The Big Push.
   You can find a full list of
these panned events and
details on how to get involved
on our website www.
thebigpush.org.

 To support us call 020 7720 8055
                                                            Feature

Send off for your free pack today                      Move your finger muscles:
To get behind The Big Push we have all                 Text ‘MUSCLE’ to fundraise
the information and support                            muscular Dystrophy campaign
you need. The pack includes                            is teaming up with the charities
information to get you started,                        Technology Trust this summer to
plus balloons, stickers, poster                        promote a SmS text messaging
and sponsorship form –                                 competition in aid of
everything you need to bring                           The Big Push.
The Big Push to your area.                                All you have to do is answer a
So if you would like to                                simple question, type mUScle
request a pack call 020                                along with your answer in a text
7720 8055 or email                                     message and push send. It will
thebigpush@muscular-                                   cost just £1.50 to enter the
dystrophy.org or go to                                 competition and you could win a
www.thebigpush.org.                                    star prize. For every entry
                                                       received muscular Dystrophy
                                                       campaign will receive £1
                                                       towards the fight against muscle
                                                       disease. To find out more click
                                                       onto www.thebigpush.org.

                                                       Push your mouse and play
                                                       our online game
                                             A buggy   With the programming power of
                                             push...   a student volunteer from
                                                       Imperial college london
                                                       muscular Dystrophy campaign
                                                       will debut The Big Push online
                                                       game available to be played at
                                                       www.thebigpush.org. It will be
                                                       completely free to play, so all our
                                                       hard working supporters can
                                                       play from home after a long days
                                                       fundraising.
                                                          The game will also be
                                                       available on other popular
                                                       websites like mySpace to raise
                                                       awareness of The Big Push.

                                                       For further details on any of
                                                       these exciting plans go to
                         Sponsored push up event...    www.thebigpush.org.


                                                          www.muscular-dystrophy.org 5
Research update

It’s Dystrophin’s 20th birthday
IT HAS BeeN 20 YeARS since the
discovery of the dystrophin gene
which, when mutated, can cause
one of the most devastating
forms of muscle disease –
Duchenne muscular dystrophy.
Duchenne is the most prevalent
form of muscular dystrophy in
children, so naturally at the time
of the discovery scientists were
elated at the thought of a
possible cure. However the
difficulties involved in delivering
                                     A cross section of a healthy muscle with the dystrophin
a healthy gene into muscle cells
                                     stained red
in the body proved to be more
challenging than first thought.
   Although the ultimate goal       conditions. Scientists now      now needs to be translated
may still be a long way off,        have a much better              into the clinic. The muscular
the discovery of dystrophin         understanding of how            Dystrophy campaign
laid the basis for the pursuit      muscles work and what           recognises that making this
of treatments for muscular          effects the mutation of just a  transition from the lab to
dystrophy in the past two           single gene can cause.          the clinic is vital and that is
decades. This includes the             A lot has happened in the    why the charity is taking
identification of a huge number laboratory to provide               steps to secure the funding
of other neuromuscular              valuable knowledge that         to do just that.


                                  Our current                        Clinical trial
                                  commitment                         on its way
                                  to research                        Professor Kay Davies has
                                  muscular Dystrophy                 been supported by muscular
                                                                     Dystrophy campaign grants
                                  campaign is currently
                                                                     for over 20 years. Her work
                                  funding 2 research
                                                                     has led to ground breaking
                                  projects covering 16               discoveries and she is presently
                                  different conditions.This          conducting pre-clinical testing
                                  amounts to an investment           for a treatment for Duchenne
                                  of £2 million in 2006-07.          that should progress to clinical
                                                                     trial by 2008.

 To support us call 020 7720 8055
                                                                     Research update

         Research gets £2.8 million boost
 The medical Research council has awarded £2.8
 million to support collaboration between the
 neuromuscular centres in london and Newcastle
 to form what will be the UK’s first ‘translational’
 research centre for the study of neuromuscular
 diseases. The project bid was coordinated by
 Professor michael Hanna and muscular Dystrophy
 campaign ceo Philip Butcher, who said:
    “over many years, mDc and others have funded
 research which has significantly improved our
 knowledge and understanding of neuromuscular
 diseases. But what our members really want and
 need are treatments and cures for these
 conditions. The centre will accelerate the process
 that turns that knowledge into practice.”
    The initiative will use these funds over the next
 five years to focus on the translation of laboratory
 research findings into clinical trials and new
 treatments for children and adults with disabling
 neuromuscular conditions.


The first ever Young Muscle Scientists Workshop
In January the muscular          opportunity to meet with         patient as, sadly, non-clinical
Dystrophy campaign played        people with muscle disease.      scientists very rarely get to
host to a one day workshop       Tania Hore, who has limb         actually meet someone with
for young scientists working     girdle muscular dystrophy,       the condition they are
on projects currently funded     was one of the day’s speakers.   working on.”
by the charity. The workshop     She provided a frank and            muscular Dystrophy
brought together the next        moving account of what it is     campaign would like to thank
generation of muscle             like to grow up with a           Wyeth Pharmaceuticals for
scientists to stimulate the      progressive muscle wasting       funding the workshop that
interest of the young PhD        condition and was happy to       the charity now intends to
students in neuromuscular        answer questions. The young      make a regular event.
research and gave them the       scientists seized this           This will continue to
chance to meet, present their    opportunity, Dr Rebecca          encourage interest in the
work and find out more about     Fairclough from the University   field of muscle research and
the charity.                     of oxford said “It was very      develop the next generation
   The scientists also had the   interesting to hear from a       of scientists.


                                                                  www.muscular-dystrophy.org 7
             Real story
We always thought he
knew more about his                      Looking forward
condition than he was
letting on. But when I                   to a clinical trial
met him from his taxi to
tell him he could take
part in the clinical trial
and his face lit up,
I knew that he
understood what
Duchenne really is.

cARolINe JoRDAN first
thought something was
wrong with her son Alex when
he was at pre-school because
he seemed a bit clumsy. It
took a while but at the age of
five he was diagnosed with
Duchenne muscular
dystrophy. caroline says “It
was a hell of a rollercoaster for
the family to start off with and        Alex with his little sister Carenza
it still is to a certain extent, but
that is what family life is like       forthcoming molecular                  Health’s total investment of
and you’ve just got to get on          patching trial at Hammersmith          £1.6 million. If the trial is
with it!” And that’s what the          hospital. The trial aims to            successful it will not constitute
whole family has been doing.           develop a treatment that will          an outright cure for
Dad martin recently dived              reduce the severity of                 Duchenne, but a significant
with sharks in a sponsored             Duchenne, so it becomes                step towards an effective
event for the charity and              similar to Becker muscular             treatment that will
Alex’s little sister carenza is        dystrophy, a far more                  dramatically reduce the
appearing with him in a                manageable condition. The              progression of the disease –
forthcoming film called ‘Time          trial is coordinated by the            giving young boys greater
for change’ to discuss what            mDeX consortium. muscular              mobility for far longer.
life is like for young people          Dystrophy campaign had a               However, as caroline says,
with life threatening                  strong role in establishing            “Research like this needs every
conditions. It is now seven            mDeX, we coordinated the bid           penny that is going” – because
years since Alex was                   and pledged a £500,000 grant           it will take more funding to
diagnosed and he is excited            from the Big lottery Fund in           develop a drug that can
about taking part in the               addition to the Department of          benefit boys like Alex.


8 To support us call 020 7720 8055
                                                                        My story

Laura’s Mum is a top fundraiser
Katie Bizzey tells us what has motivated her to
fundraise and how she went about it.                                     www.justgivin
                                                                        com /walkforl g.
                                                                                     aura

“   I Am mUm To lAURA who
was diagnosed two years ago
with minacore myopathy. I
                                  talked about. I would worry
                                  about the whys and
                                  wherefores later!!
don’t need to say how                I didn’t feel easy about        humbled by the generosity of
helpless I feel as a parent, as   asking for money but with the      our friends and acquaintances.
there is nothing we can do to     Trek ahead I just had to get on       With the help of friends I
relieve our children of           with it. I wrote to people,        arranged a charity walk. A
muscular dystrophy.               several local businesses and a     route was planned, I was lent a
   When I flicked through         couple of celebrities for raffle   fabulous barn, food for lunch
Campaign in January, out fell a   prizes. Then I discovered          was donated and raffle prizes
flyer about the Sahara Trek in    Justgiving.com, where I was        were produced. We had
November. I knew                  able to compile my own web         about 40 people, bright
immediately that the Trek was     page where people could            sunshine and a great day. I
something constructive that I     donate online and I could          charged £10 to come, sold
could do for laura, the charity   advertise my total.                masses of raffle tickets,
and everybody else who lives         money just started arriving     received a huge amount from
with muscular dystrophy. I        from the most surprising           supporters who couldn’t come
also knew that if I didn’t send   people and I was passed            and raised in excess of £900!
off my £250 registration fee      amounts from £5 to £500. It           I have a new confidence and
right there and then, it could    has been a very moving             I have learnt a new skill. I can
turn out to be something I just   experience and laura and I are     fundraise and over the years I
                                                                     will do more, I have touched
                                                                     the tip of an iceberg. But
                                                                     mainly I am now eligible for
                                                                     the first independent Trek for
                                                                     muscular Dystrophy
                                                                     campaign, with my total
                                                                     currently just over £5,000.

                                                                          Katie Bizzey
                                                                                                 ”
                                                                     If you would like to tell us your
                                                                     story please get in touch with
                                                                     David Pearce d.pearce@
                                                                     muscular-dystrophy.org or
 Laura striking a pose whilst walking with her mum
                                                                     call 020 7720 8055


                                                                     www.muscular-dystrophy.org 
                Events

                                  On the look out for
                                  the next Picasso
YoUNg PeoPle AgeD
4–19 from across the UK
will produce an estimated
20,000 works of art this
summer for the muscular
Dystrophy campaign’s
Young Pavement Artists
competition. To coincide
with International Polar
Year (IPY) this year’s theme
is the Arctic and Antarctic,
a subject that international
pavement artist Julian Beever
thinks will get the creative
                                  Mark Speight (right) is delighted to be involved with young
juices flowing; “children have
                                  pavement artists
great imaginations and the
theme of Arctic and Antarctic     campaign. Winners of local        Speight. He sees the
is a wonderful opportunity        events will be entered into the   competition not only as a
for them to stretch their         national competition where        great chance to flex the
creative and artistic talents                                       creative muscles, but also an
by capturing life in these        Children have great               opportunity to learn: “The art
spectacular parts of the world”   imaginations and this             competition empowers and
                                  is a wonderful opportunity        gives young children from all
How it works                      for them to stretch their         backgrounds, abilities and
Youth groups and schools                                            disabilities the chance to
                                  creative and artistic talents
organise their own event                                            be creative and learn about
where children draw on a                                            important issues like
pavement slab or sheet of         the panel of judges will          muscle disease.”
paper on the ground. The          include representatives from         The competition is open
pictures are photographed         the Royal Academy of Art.         now and the deadline for
and winners are selected          A prestigious winner’s            entries is 31 July. For more
according to age group.           ceremony will be held in          information check out our
The cost for entry into the       london this autumn.               website www.muscular-
competition is £1 per child,         The president of the Young     dystrophy.org/pavementart
with the proceeds going to        Pavement Artists competition      or to request a pack call
the muscular Dystrophy            is children’s BBc’s mark          01202 201021.

10 To support us call 020 7720 8055
                                                                      Events

Muscle Power at the Marathon
Sunday 22 April saw 106 runners pound the 26.2 mile route for
this years’ 2007 Flora london marathon on behalf of the
muscular Dystrophy campaign.
  Starting on Blackheath as the sun rose and finishing several
hours later, for some blistered and weary, but for all simply
euphoric at crossing the finish line at Pall mall and collecting
their well deserved medal.
  A wonderful day was had by all and we’d like to say a
huge thank you to each and every one of our runners
and to all the supporters who came and cheered them
on. We would especially like to thank David Hastie and
Robert Driver who raised over £12,000 each!

Run, Run, Run!
muscular Dystrophy campaign still has places
available for this years’ BUPA great North Run that
takes place in Newcastle on 30 September. So if
you’ve got the stamina to take on the world’s
biggest half marathon contact the events team
now: Sarah Jane Stonard 020 781 8055
events@muscular-dystrophy.org



                                                              Corporate boost in
                                                              the fight against
                                                              muscle disease
                                                              muscular Dystrophy campaign
                                                              would like to thank makro,
                                                              Prudential and Norwich Union
                                                              for all their fantastic
                                                              fundraising efforts – the three
                                                              charity of the Year partnerships
                                                              for 2006 have raised nearly
                                                              £00,000 for the charity!

Can you help?
our charity of the Year partnerships often come about because an employee champions our
cause, so if your employer would be willing to support a charity please contact the corporate
team: lisa Robinson 020 781 182 fundraising@muscular-dystrophy.org



                                                                   www.muscular-dystrophy.org 11
                                                                   The weekly shop




                                                                   You can now do your
                                                                   weekly shop at Tesco
                                                                   through our online
                                                                   webshop
                                                                   www.buy.at/muscular
 Buying                 charity Flowers are now offering a         dystrophycampaign.
                       brand new range of stunning tulips in       Tesco are now offering
 flowers               a mix of colours. For every purchase        muscular Dystrophy
 for that              you make, quoting mDc, charity
                       Flowers will donate 15% of the cost to
                                                                   campaign £10 for every
                                                                   new customer who makes
 special               the charity at no extra charge to you.      their first grocery purchase
                       call 08105 00 00 or visit www.            through the above link.
 occasion              charityflowers.co.uk to order now.


 Give your mouse a heart!
 Raise money for the muscular Dystrophy campaign just by
 searching the web! www.everyclick.com is an internet search
 engine with a big difference – it donates half its revenues to charity.
 Simply visit www.everyclick.com and select muscular Dystrophy campaign to
 support the charity. It does not cost us, or you, a penny so please make
 www.everyclick.com your homepage and use it whenever you search the web!


  From time to time we may pass your name to other charities to help raise funds. If you do
  not wish your name to be passed on in this way please complete the form and return it to
  the address below.

  Name________________________________________________________________
  Address______________________________________________________________
  ________________________________________ Postcode _____________________

  Please send to: muscular Dystrophy campaign, FReePoST loN 314, london, SW4 6BR.

Contact us at: 7-11 Prescott Place, London SW BS
               Tel: 020 781 8055
               Email: donations@muscular-dystrophy.org                  Registered charity No: 205395

				
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