On a very pleasant Saturday afternoon – no floods this year – we had another successful meeting, attended by 50 members,  patients and carers at the John Radcliffe Hospital, Oxford.
This time Dr. Roger Chapman had arranged, first, for Dr. Tom Karlsen to talk about the study of genetics for PSC.
The matter covered was substantially the same as the presentation Dr Karlsen gave at the Mayo Clinic Florida. He stressed, once again, the great importance of international collaboration into liver disease and IBD being initiated in Britain, and the work of STOPSC  in the US. These international efforts will combine in this endeavour to get at the root cause of PSC.
So far the countries involved include all the Scandinavian countries and the UK, Italy, Belgium, Holland, Germany but not yet France. As always, there are organizational challenges in international collaborations, but Dr Chapman is in contact with hepatologists in Paris ~ France is also likely to come on board.

Long Term Project
It‘s clear that genetic research into PSC and other liver diseases is a long term project, and Dr Karlsen was at pains to make it clear that we are at the beginning, and no conclusions can be drawn at this stage.  It remains the case that, even now, after many years of research (Dr Chapman has been searching for the cause of PSC and that elusive trigger that sets off our PSC, for 35 years), we still know little about the pathogenesis of the disease.
(For further information on Dr. Karlsen‘s work, see www.psc-literature.org/KarlsenT.htm. This is David and Judy Rhodes‘s excellent PSC Literature site). Dr. Chapman said that, in this kind of genome research, the Oslo team is really showing the way. In the US there are serious funding problems and the American population is much more genetically diverse leading to
a more complex situation.
In the UK and Europe this is less the case ~ the population is more genetically homogeneous ~ the Viking and Norse invasions and all that!

We were very happy to see a number of long-term members and some transplantees.  Danny Walsh came with his wife, and it‘s coming up to 10 years since he was transplanted.  He once sailed half-way round the world to raise money for PSC research.
Once again we welcomed Richard Hall of the British Liver Trust (BLT) who is the co-ordinator and liaison-man between the BLT and Patient Support Groups.  Also Haim Boemeester had come from Israel to attend the meeting. He and his wife have started a PSC support group there. Very small at the moment ~ they think they have 250 PSC patients in the whole country.
Sue Cullen, (Dr Chapman‘s previous research assistant, now a Consultant in Gastroenterology) was also present, as was Dr Simon Rushbrook from Addenbrooke‘s Hospital, Cambridge.  He‘s handling the Cambridge end of the project.
Thanks to a number of generous donations we were able to give Dr. Chapman a cheque for £5,000 towards his genetic research project.  We‘re especially grateful to Martin Boughen who raised £1,500 with his colleagues. He gave a very amusing account of the clever and devious ways he had managed to part his colleagues at the UK CWI team from their money (see business meeting page).