Hi everyone
I am holding a meeting for any Hughes sufferers, friends, relatives etc on Dec 15th. It will be in the AMT Coffee House on the ground floor of St Thomas hospital from 5.30 to 7pm. There will be a red Hughes syndrome foundation hat on the table! Hope I meet some of you. Happy Christmas!
Blessings Ann
Hi Honey, hope the meeting goes well xx hazel
Oh, how I wish I could be there!
I wish you could too, big sis xxxx
What a shame Ann - i'm at Tommies next week for my appointment next week. Sorry can't make it but I hope everyone has a good get together.
Travel Nut- what day are you there? I am there next week too!
Thanks as ever Ann - really pleased to hear that you're still getting new members 
I'm afraid that the 15th December is the charity office moving date - yes, the NHS have finally confirmed we will be moving to our permanent home at Conybeare House (the nice old building which contains the chapel). Can't wait to be out of our temporary home I must say!
If by some miracle I have the PC, email and printer up and running by 5pm and have sort of unpacked I will try to scoot over to Tommies.
Kate x
YEAH Kate they finally moving you no more hospital gurneys as desks lol
Is the Conybeare house at Guys or St Toms i get confused!!! but yeah tell us when you moved in will come have a HSF house warming party lol
paddy
I know, I can't believe it!! I will be so glad to not be sitting under an air vent which seems to dump a variety of germs plus very cold air. Also, it's a nightmare for anyone (including deliveries) to find me - I still leave a trail of breadcrumbs to find my way out
Conybeare House is still at Guys but it's in part of the Grade II listed building in what they call the colonnade. I'm afraid access won't be easy for all patients to visit though as there are stairs leading up to the front door. That's the problem with conversions ...
Hey ho, at least it will be a permanent and FREE home for the charity
Isn't there a tunnel that can take you to that building? Ive done a couple of support group meetings at Guys and a Lecture and on one occasion we had to get out via the Tunnel. Had a wonderful time racing somebody along it with my wheelchair as she had a scooter and I hung on the back for a tow up the hill (yes it has hills). The only problem came when we hit a bend - she went round it and I carried straight on!!!! I think they could hear us laughing all over the Hospital at least they could when the lift doors opened and we saw their faces!!
Check it out as it may be a way (long way) for disabled people to gain access.
Hughes Syndrome Study
Professor Graham Hughes' BLOG February 2014 via London Lupus Centre
Mobility, breathless - Hughes?
Hughes syndrome.... very anxious 
Pain and Hughes
