ALS/MND Consortium

There are many organisations in the world today devoted to ALS/MND . Most of them you can find on the Internet. But, there seems to be no cohesion in the different organisations. no unity. Each acts independently of the other. You can spend hours looking for a world wide body committed to dealing with ALS/MND and there is none, well, none that I have found.
What I would like to see is a world wide unilateral Consortium made up of members from every country in the world. There would be a Governing body with a board of directors and a CEO.
I have just been looking at the pile of notes that I have compiled for this entry and realize that on this subject I am getting in way out of my depth. So, to make things as simple as possible I will outline, very roughly, my ideas.........
The members would consist of specialists in every field of the medical profession who deal with ALS/MND...( this would include National Health Boards from each country) . There would ideally be at least two to three Representatives from each field. I would also like to see an International Bank account set up funded by large Company's and or individuals, again from every country. The reason behind this is that we, the person who has ALS/MND face a problem worldwide. Speaking for myself my wife and I are in the difficult position of not having enough funding to buy a house that is suitable for wheelchair access with wet areas etc.
We would in that case apply to the Consortium through a National Office in our own country to get the funds needed to acquire a suitable house. This again would also apply for the acquisition of any mobility device to help one get around. I know that it is difficult in some countries to get anything for helping with the general day to day task of living and that a lot of people have to wait many months for what they need, ie a power chair for instance.
In the area of research each country would provide details of any findings to the Consortium and that information would be accessible to all members. This will give uniformity world wide in that area. As with other sites on the Internet there would be an international 'Chat Room' maned 24/7 by volunteers.
Another thing that I would like to see ( and the logistics of setting it up would be a nightmare) is to have a data base set up so that every body who has been and who will be diagnosed with ALS/MND goes into this. This data base would again apply to all countries registered with the Consortium and would be accessible to all Medical facilities. Information in the data base would be correlated to provide up to the minute statistics (world wide) on all types of ALS/MND, the Sod1 gene ect. could be invaluable to research being done and would be open to all Organisations in the Consortium. The demographics alone on say just the age of people would again be invaluable. And all individual / personal web sites would be asked to join the Consortium. There are at the moment a lot of people on the Internet, like myself, who have a web site and I have no worry about who reads it, the more who do then the better for me.
I would also like to see Parliamentarians from all countries represented on the Board. so, in a nutshell, all sites on the net at the moment dealing with ALS/MND would be in the Consortium.
I personally believe that this would bring uniformity and cohesion to the Internet sites. Instead of being scattered all over the place everybody would be under one umbrella. But, am I dreaming of the impossible. I have seen a lot of names of people, on the net, who would be ideal in running something like this and one in particular jumps out at me. Many of you will know him from several different web sites. His name is Dr. Paul Wicks from England. ( Sorry for dragging you into this Paul)............