Bravo I hope the pals understand that.
Fotios :cool:

No one was a hypocrit it was just grabbing at hope and believing the bull that some researchers told them.

What really bothered me was that a very high respected allias gentleman researcher [hate to call him doctor] knew all about at least one of the shysters and yet didn't have the courage to come right out and tell us.

The members that were there learnt a lesson they won't soon forget and unfortunately some lost that hope in the process.

Many have drifted away because of it.

So don't blame the members for finding the truth and stating it you put the blame where it should be on the backs of those who see the monies to be made and the medical profession for the members who only see their own private status quo and are afraid to rock anyones boat less it happen to them.

And of course on the website that allowed it to go on endlessly till it had been proven by us.

They took off anyone selling a bloody watch and left those who were taking life savings for a lost cause.

So don't blame each other as we were the victims and not the perpetrators.

reply to Dave WV
 

No, we didn,t build it !! We have been trying to get into this neighborhood for ages but most of the property was high priced.

My wife noticed this old house that , a builder had just revamped...basically renewed a 1949 house .A bit like the "extreme house makeover" show , without the tears and a needy family wiyh 30 kids(lol)

So when it was finished my wife wen to be nosey, thinking it would be outof our price range...........but it wasn't and was laid out perfect for one of us ALS team members.

I appreciate you asking and glad you we able to relay your house to make it user friendly. There must be lots of PALS and other disabled people out there, who really struggle on a daily basis to do the simple tasks, simply because they are in a property that is not handicapped accessible and they do not have the means to alter their circumstance. Can you get grants ? what about other countries? what does their gov do to assist those that need assistance?? Anybody?

Hey Wayne,

Good to hear from you. Have you heard from Harry? Has anyone heard from Harry?

J

Hi Jeff, Harry is a member of the ALSTDF forum, he last posted on 08/23/06 seen here http://www.als.net/forum/topic.asp?T...41&whichpage=2 you might be able to email him there?

His user profile can be located here http://www.als.net/forum/pop_profile...display&id=503

Jeannie x

Jeff,

I did get an e-mail from Harry about a month ago. I would send greetings on the TDF forum. Its a good forum and has grown since BT was down. And Dr. McCarty on it is excellent with very good answers to a lot of patient's questions.

Hi all, glad to see people are wondering back in again. I think the thing that the online ALS community misses most about BT is its high throughput of new members and old hands. Lots of them seem to have dispersed around the globe, especially back to sites in their country of origin. So the UK lot have retreated back to BUILD, the canadians are over at ALS Forums, and the sciencey people are at ALSTDF. We're getting a lot of new members at PatientsLikeMe too, but I don't think we get as many "random" people moseying in.

That said there is certainly a lot less questionable quackery about in the ALS land since BT shut down, I haven't heard a jot about stem cell transplant in months!!!

Paul