Posted by Simon (213.122.139.104) on June 11, 2001 at 11:32:58:
Hi everyone,
Been a busy weekend and it's taken a while to get everything typed up....
Anyway, we had our official launch on Saturday (thanks to Bob for his best wishes) at a meeting organised by the UK Migraine Action Association. Due to the lack of anywhere else for clusterheads to go until recently, they have adopted us until now, but have given OUCH (UK) their blessing and every help we could have asked for. We look forward to working with them where appropriate.
There were 82 people there, around fifty of whom were clusterheads, one of whom had had the demon for 53 years (30 undiagnosed). We were particularly pleased to welcome ete (Eberhard Doms) the President of VCH/OUCH from Berlin and, as she has already written, Annemarie ("ave") from the Netherlands.
As usual, for many, the chance of meeting people with clusters was in itself reward enough for attending (I was very touched when three people dashed across the pub before the meeting and said "are you Simon?" with an excited look on their face - of course, when they got chatting that look soon disappeared but...)
However, the highlight for all was the talk by Peter Goadsby. His genuine concern and affection for C.H. sufferers shone through in everything he said, as was his support for patient groups - he feels very strongly that if we are pro-active we can put pressure where it needs to be applied, as well as helping with research.
One final point, OUCH (UK) is not a rival to OUCH but a sister organisation. With different laws, different systems and so on around the world, it is making sense for national groups to work on their own regional problems while, all the time maintaining contact with each other to work on common problems.
If you wish to read a report of what was said, or even join OUCH (UK), follow the links below.
Simon
meeting report
join the charity