Latest News at the Hughes Syndrome Foundation
Awareness Week 3rd-10th September 2006
Our Awareness Week
went very well, particularly as it was combined with all the
publicity we had
received before and during September. As usual, the sponsored
walk took place on the first Sunday in the week and was well
attended - many thanks to all our participants who raised
in excess of £1600 through their sponsorship. The Patients'
Forum was held on the Wednesday and proved to be very popular
- so popular we intend to hold another forum in April 2007,
more details of this will follow was they have been decided.
Don't forget that it will be Awareness Week from 16th-22nd
September 2007 - if you would like to get involved please
contact Kate Fitzpatrick.
Estelle Morris joins us as patron
In 2006, the Right
Honourable Estelle Morris PC kindly agreed to become a patron
of the Hughes Syndrome Foundation. Estelle was diagnosed with
Hughes Syndrome in 2002 and has been a patient at the clinic
here at St Thomas' hospital since then. Known formally as
Baroness Morris of Yardley, she has been involved in politics
since 1992 and held posts in the labour government cabinet;
she is now labour peer and entered the House of Lords in 2005.
Hughes Syndrome Foundation charity ball 2006
On 1st July 2006,
the Hughes Syndrome Foundation held its first charity ball
in the grounds of 'Stumblehole Farm' in Surrey. The ball was
attended by over 200 guests and the evening was a great success
- in total this charity event raised over £24,000 for
the Foundation and we would like to thank everyone who contributed
and participated.
London
marathon 2006
We
would like to thank Dharmesh Shah and Philip Carr who both
ran, and completed, the London marathon this year on behalf
of the Hughes Syndrome Foundation. Their fundraising will
help us promote awareness of the disease to doctors - many
thanks!
Support
groups
We
are continuing to set up local
support groups throughout the UK and around the world,
so you can get in touch with each other more easily. Our members
have found these groups to be very beneficial both in terms
of offering each other support and raising awareness in their
local areas so that more doctors, clinics and hospitals know
about Hughes Syndrome. Please contact Kate
Fitzpatrick if you are interested in either joining or
setting up a support/ fundraising group in your area.
Professor
Hughes retires from the NHS
Professor Graham
Hughes retired from the NHS on 26th November 2005. Although
his NHS days are over, Professor Hughes continues to play
an active role in the Lupus Unit's research and publications
and remains an energetic patron of this charity. He has now
opened a private clinic at the London
Lupus Centre based in the London Bridge Hospital.
Kay Thackray
publishes her second book
Following the success
of her first book, Kay Thackray's second book, More Sticky
Blood,
continues to demystify Hughes Syndrome in a friendly and accessible
way. Kay also looks at the medical changes and discoveries
that have been made since her first publication, Sticky Blood
Explained.
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