Musicians with Dystonia Bulletin Board

Years ago I said that this board should in the least have an FAQ. A library/resource area would be even better, key documents have been posted here and linked too that should be essential reading for anyone on this board. Off the top of my head, for example...

http://www.dystonia-foundation.org/filebin/pdf/focal%20dystonia.pdf

http://www.markashford.com/2010/03/23/focal-dystonia/comment-page-1/#comment-22

http://www.bodymap.org/articles/artdystonia.html

Whenever I want to point someone to something I have to trawl through my posts using the search function to try and find it - very tedious and I don't always find what I need. I do not have the time to keep doing this and as you have already gathered, many of the same queries keep coming up again and again.

The trouble is this resource is hosted, free of charge, by these people:
http://www.dystonia-foundation.org/

Any upgrades require IT staff time to implement and support, who pays for that?

There is also the 'political' dimension here. The view of the hosting organising is that dystonia is an incurable neurological disease. They see musicians' focal dystonia as no different - a subset group, and I think this board was probably set up orginally just to allow people to offload, chat and give each other mutual support (see the link at the top 'are you depressed?) rather than actually exchange information on how to recover. This view was certainly demonstrated by the moderators in their early posts to this forum (see my post four down in the 'hope' thread) who seemed to take the view that anything posted about methods of recovery was damaging and raised false hopes, after all, it's incurable right? (Spot the circular argument).

I played with the idea of setting up a newe website that would enable all the things discussed here, but events kind of over took me. Farias set up a new site for musicians with FD with a much more powerful forum, and now on this page Guitartron is talking about doing something similar.