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.

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.

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.