For those of you who don't know, we do have a Facebook page: facebook.com/pages/Hughes-S... and I have finally worked out how to add in the You Tube app so you can now view the three videos there now - phew!
There is a possibility of more videos arriving in the next few months as a health journalist is hoping to do some filming at the Patients' Day tomorrow.
Also, for those of you who can't make it to the event tomorrow - fear not, GSK and Sanofi Aventis have given us £5K funding so I have arranged for a sound technician to make a recording. This should be available to listen to on either our website or FB page, and there will be a typed transcript available too for a small fee.
Looking forward to seeing some of you tomorrow - it's going to be v v busy with over 120 patients, 20 or so guests (including doctors, journalists, photographer etc) and of course, the seven speakers. You can access the programme here: hughes-syndrome.org/events....
Thankfully my lovely husband is coming up to help me as I still can't lift anything due to the neck/spine problem! And the Day wouldn't take place without the trusty HSF volunteers - massive thank you to Beth, Yvonne, Hannah, Carol and Mary FB.