I just wanted to remind people about a couple of web oriented facts.

As you all know we ask people here to use a screen name and not their own, we ask that you do not post in the open forums you phone, email address or any personal contact information. I want to make sure that all the new people have an understanding of what we can and cannot do, and why all this is.

This is being prompted by a discussion I had yesterday with someone that has finally realized that the Facebook support group that they post to is carrying their real name, and in their case, people in their lives that they did not wish to know about their inner feelings, their physical situation in detail etc. now do. Facebook is certainly not private. More than that, it is not free. It never ceases to amaze me how people seem to not get that Facebook is a multibillion dollar enterprise, built on SELLING PEOPLE'S INFORMATION ABOUT THEMSELVES TO OTHERS. Oh some of it seems quite benign, they target your timeline with ads from people that have bought your information from Facebook, and have something that they think you might buy. For instance my timeline is full of aviation things, as that is pretty much the only personal thing I have in my profile there. But they sell their lists to anyone that wants to buy with little discretion, credit reporting agencies, insurance companies, big employers and so much more. What do those people do with the information they are buying? I'll leave you to think about the many, many things that the world knows about you from Facebook (not all of which is benign to you), all the big search engines that catalog every search you've ever made, and who also cover the entire world wide web in detail with web robots (spyders) that gobble up every thing ever put on it, and catalog it all regardless of perceived value. Those big search engines are not free either, they sell everything that they have learned about everything to anyone with the money to buy it.

So while we worry about whether or not the government NSA is spying on us, interacting in our modern world in a normal way, all these publicly traded companies likely know much more about any of us than our government does. And this is the way of the future, this genie is out of the bottle, and our smartphones that we all love so much are not things which we are not going to give up; after all who doesn't like the instant access to knowing about something by doing a Google search, or have your phones location capabilities give you a walking path in a strange city to the store that you wish to go to? Even my Nest smart thermostat in my home talks over a wireless connection to my phone, and is routinely in contact with the manufacturer exchanging data with them, getting updates to its software, and more. Nest was recently bought by Google�. who now knows when I am on vacation ( well I don't take them but in theory) when I leave to work and when I come home, and other minutia of my daily life and physical location.

So I am telling you all this because it is the real world, and in most cases things that appear to be free are really not. I want to state something that I am very proud of, and that is OCF has never, and will never sell our mailing lists or any information we know about anyone. Oh we get asked all the time, and we could certainly use the money, but I have had it written into our corporate by -laws that it can never be done. So unlike Facebook, this forum is actually free. And if you are careful about what you post, your identity will never be known to anyone, not even those of us here at OCF. This makes it a safe place to be honest, and get real usable, actionable help. You may get an email from OCF about something but not from other entities or individuals.

This does not mean that the posts here are not wandered over like everything else on the web by search engine spyder web robots, they are. But it matters little since those of you that care about privacy, use a unique screen name and you do not post in the open forums your personal information that identifies you. The search engine spyders cannot get into the back end of the forum software that contains your profile, nor can they get into your private messages. We have people try to get into OCF almost everyday, by registering to this forum that have malicious intent, to sell you something to gather your data. But every night and every morning we find those individuals and we ban their IP address, and their access to the forums and the ability to contact others here. It's a tedious task, but it has to be done to protect you.

I just wanted to make this clear. I am a very visible person as a spokesperson for OCF, my name what I do for the foundation and patients around the country, where I lecture and so much more is all out there, so I don't really care that my real name is here. You should.