ataxia presentation oct 2011
DESCRIPTION
What is Ataxia UK and what you can do to help.TRANSCRIPT
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Ataxia: What’s that?
Ataxia UK works across the whole of the UK and is a charity registered in Scotland (no SC040607) and in
England and Wales (no 1102391) and a company limited by guarantee (4974832).
Ataxia UK
www.ataxia.org.uk
Helpline: 0845 644 0606
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What is Ataxia?
‘Ataxia’ means ‘lack of order’. People with ataxia have problems with movement, balance and speech
Over 10,000 adults in the UK have a form of ataxia and about 5,000 children
Several types of ataxia start in childhood and can leave children in wheelchairs, struggling to talk and walk
Friedreich’s ataxia is the most common form
There is currently no cure for ataxia but we are working to find one
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What does Ataxia UK do?
“Ataxia UK is the largest national medical research charity for
everyone affected by ataxia.
We fund research and provide support for anyone affected by
ataxia.
You can join Ataxia UK for free”
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Supporting People
Helpline and advocacy servicesDedicated Ataxia Centres in national
hospitals in London, Sheffield and Oxford
National network of branches and support groups
Conferences and up-to-date information
Free membership
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Searching for a Cure
“Ataxia UK funds a wide range of research
projects. In the past five years we have spent
over £3 million on research,
with some notable successes.
Finding a cure for ataxia is our highest
priority”
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Some Research Projects Currently Funded
Exploring the potential of stem cell therapy in ataxia
Finding new drug targets by understanding the condition better
Developing a new promising type of drug (called HDAC
Inhibitor) for Friedreich’s ataxia – the first human trial to start
soon
Testing a genetic approach for the future treatment of inherited
cerebella ataxias
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Chris’ Story
“The most difficult thing about
being in a wheelchair…
well, there's more than one... but
the way people avoid me, the way
people speak to me like I'm a child.
People are very happy to discuss
me but they're not happy to talk to
me”Chris stars in an ataxia awareness video
on: www.ataxiaawarenessday.org
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“I’m very fortune, I’m a positive,
energetic person. I love my
independence. I was very down after
my diagnosis but then I joined Ataxia
UK, spoke to others with ataxia and
found hope again ”
Steph’s Story
Steph stars in an ataxia awareness video on: www.ataxiaawarenessday.org
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“I do not really understand what Friedreich’s
ataxia means, but I have to go to the hospital
all the time. It doesn’t stop me doing
things. I went rock climbing and got higher
than some friends! My family are doing lots
and lots of fundraising to support me and Ataxia UK”
Millie Mae’s Story
In February 2010 Millie was diagnosed with Friedreich’s ataxia
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How You Can Help
•Tell your friends about ataxia:
just 7% of people know about it
•Put up a poster in your local library,
café or GPs office
•Hold a coffee morning or raffle
•See our Fundraising Pack for further fundraising ideas
•Join us and become a Friend of Ataxia UK for free
Visit www.ataxia.org.uk for more information or to make a donation
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Thank You for Your Support
Ataxia UK works across the whole of the UK and is a charity registered in Scotland (no SC040607) and in
England and Wales (no 1102391) and a company limited by guarantee (4974832).
Ataxia UK
www.ataxia.org.uk
Helpline: 0845 644 0606