Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 I just want to say something here because it appears that there may be a suggestion that this group CMTUS have it's own newsletter. I enjoy having the option to come to this group because it is an additional place for us to gather our information and help one another. However, I am concerned that we are in danger of becoming disorganized by spreading ourselves too thin. We need to stick together and support those organizations that already exist for us and use this site as an additional place for information and support. Remember that there is great strength in numbers so we must stick together. I think our group needs to have medical and other support backing up us up with a governing board. Two organizations come to mind that already exist. One is the CMTA organized in 1983 and can be found at http://www.charcot-marie-tooth.org/ . They have a message board that is helpful and give us guidance and information and have the needed governing board. The other organization is the CMT International organization and can be found at http://www.cmtint.org/. You can join and if you do not have the money then you send what you can. They do have monthly newsletters and many helpful materials. We need to support these organizations and go forward from there. Once again, I am glad that we can express ourselves here but we need to organize behind those organizations which are already trying to forge ahead. H Quote Link to comment Share on other sites More sharing options...
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