Well, here we go again, now with 24 hrs internet access, and maybe it will be written better the second time around. Grrrr!
Dr Marie Vidailhet is currently in Sydney attending the 17th International Congress on Movement Disorders. She works with Dr Meunier on the research project in Paris which we are funding.
I'm in Sydney for our first ANZ OT Meeting and we were able to grab a quick lunch together between sessions of the Congress. AmazIngly, in the huge throng at the Congress, she and Julian Rodrigues had not met up.
She was very charming and hugely impressed that I had changed my flight from Canberra in order to meet her. (Thanks Jeff for the heads-up that she would be in Sydney).
She briefed me on their research project in terms which we know already. She is confident that they will come up with some publishable information which will add to the body of knowledge about the location of OT and ways of treating it.
She says they have 30 OT patients. Like us, they are mostly scattered and lonely souls.
Our OT meeting in Sydney begins with informal dinner tonight, and I have been giving thought as to how to make any future meetings sustainable and with a better local organisational basis. I was therefore interested to hear from her that there is an Association in France called APTES. It focusses mostly on Essential Tremor but has a small OT sub group. They meet annually and publish a newsletter and have a website. In French of course. Do we know about this already?
I wondered whether one of our bilingual Forum members from Canada might be interested in checking it out and seeing whether it has anything of relevance to us?
She said that the APTES members also kept an eye out for anything new on OT, in the research or the media, and then drew it to the attention of the neurologists. She said this was very useful as the neurologists don't have time to keep up with the research.
Do we do this with the information we find?
In organising the Sydney meeting I have received emails from Forum members in Europe, wishing they had such a meeting there. Dr Vidailhet said, cautiously, that if such a meeting were organised, and the organisational and funding challenges were taken care of, she could be prepared to participate , in the way Julian Rodrigues is here.
She was extremely warm and nice and, amazingly, knew a young French neurologist I have known personally since birth, who works in her Institute. Small world.
I'm sorry we could not not meet for longer but hope some of these leads will be helpful.
Sue Boyd with Dr Marie Vidailhet in Sydney 20 june 2013
site of the OT meeting
Sydney OT meeting : sculptures by visiting Chinese artist Xu Hongfei
- To encourage us!