Reply To: My, this forum has slowed down since I was active…

January 17, 2015 at 4:51 am

Yes, it is as if the perception with the foundation is that this forum of interaction is not significant. From what I read, it seems like the focus is exclusively on fund raising, such as grants to support salaries and office space in PA, and symposiums at places where doctors might enjoy leisure conversation, compared to practical aspects related to education and therapy for the GBS afflicted. Again, the issue of residuals and chronic care for ongoing patients with residuals is lacking in planning, and this forum is a perfect example of a core lack of insight fostered here for many years now. That is, this web presence speaks volumes on a skewed focal point…. just look at the web pages and the content, how the forum link is as if an afterthought. Perhaps I should read up on what the foundation does with the grants, and the financial statements of the institution, which I am sure are public? (please post a link to financial report for the foundation) Look, I’m sure some workers are doing a great job… but the lack of focus on creating a virtual meeting place is inexcusable, and indicative of something more systemic. In fact, this web site is far less professional than many internet computer gaming groups I participate in, whose budgets is nil. At least they had the common sense to not use a flash BBS…. blah, and comprehend the significance of sticky threads to update participants on a host of issues. So, I hope someone receives support and knowledge here, but as stated above, the level of customer services for this medium is poor at best. Getting rid of spam…. an elementary aspect of any forum. Please help me understand that this foundation is run well these days?

My post was initially written what… ten months ago… but no reply from a staff member or an authorized volunteer… same as usual, since I see no change in behavior compared to many years ago, when the forums were still slow and as poorly run, except at least there was some activity. May as well shut the joint down, from what I can see here. Disgusting, I say. Totally symbolic of the internal workings of this institution, is the way it seems to me.