What can we do?
 

What can we do to get the als community posting here?

Increase its Googleranking by increasing the number of links that redirect here.

Also want to add if you use descriptive titles on posts the search engine will pick them up better and our site will get closer to the top.

Glad you all feel at home here.:D

hugs

It was the technical content on OBT that made it what it was. So far, this forum is more like BobbyB's blog (nothin' personal, just the way it comes across).

Bobby's been holding this together single-handedly for quite awhile. Maybe we can help? Hey Bob, you won't ban me for posting about possible alternative therapies, will you? ALSForums did after only 3 posts!
Mark

Geia hara
Alternative therapies cost 10 to 20 billions $.
ALS solution cost 2 billions $
Fotios

Jeannie, thanks for telling me about this site...Lisag

Hopefully in time more pals will find this site !! I read all the pals forums and contribute to some of them.
Whats important is that we have as many sources out there to connect old and new pals, as well as spread the word about the mnds.
A cure is needed, and ALS....Lou Gerigs....PLS.....MND need to be spoken by all, with the same understanding and frequency as cancer, stroke and heart attack !!!

Your welcome Lisa, welcome aboard ;)

Jeannie,
I put up a link on ALSTDFs forum...
Someone posted over there wondering about old braintalk..and was having problems registering..I tried to help with the problem..
And told them many members of old braintalk have chosen to stay here as well...and that at first this was a safehaven for displace Braintalkers but now that its own forum with new adminstrators and mods...
I posted a link so they can directly to Braintalk2 .Lisa

Thanks Lisa :)

I see mods have closed many threads and removed posts over at bt1... one post in particular by john lester where he stated the google ads generated 99% of the funds for the site....It was only deleted after a member confronted him.

:mad: so if google ads generated 99% of the funds for the site, what and where are the donations being spent on :confused:

Jeans,
Invite eltacoDave. He'll livin things up here

Please People - don't invite Dave from EP to join and ruin every site. I hope there is going to be one left we can use that he has not contaminated.

Hi JoelC,
It's very nice to me meet you...
I for one am glad to see a place where I can find some old friends and meet some new ones..and have open discusssions on a variety of ALS issues..
I don't know all of what happens on other sites..but my personal point of view.is...all of us have unique personalities and opinions.. and some of us tend to more stubborn than others...but we are all on the same side here..ALS is the enemy..not each other...
Disagreements are going to happen..but "hopefully " we can still be kind to one another even when we do disagree..
Dave..good to see you are hanging on there..Lisa

Lisa.....
 

Trust me...we don't need Dave from El Paso here. Rather than go into all his claims, go to the "Patients like me" forum and read some of his posts and the exchanges that have taken place....Believe me, you will understand.
Alison

Alison..
Thank -you....I have been off all of the forums for almost a year..so I am sorry ...I truly did not know who this person was...
I do hope that no one will join here to try to use this forum to be malicious to another person..
But if that happens I'm sure the mods here will get the situation under control,,
Joel C,,,again very nice to meet you..Lisa

Nice to meet you as well Lisa. Sorry our first meeting has to be about this, I am usually an extremely tolerant person and definitely think (and allow) everyone should have freedom to share their experiences, but this Dave seems to have a hidden agenda and I don't trust he has everyones best interest at heart. If he did then he would have a different attitude about the way he posts.

Welcome back after being away!

Hi Joel C..
Sorry I misunderstood your original posts...its good to be back and meet new friends as well as find old ones here..Lisa

EltacoDave, lol. Very funny Dave. I had to register and give Lisa a shout. It's been a long time. Good to see Gary still doing ok. How have you been this last year? I'm still kicking. Nice seeing you around. Take care, Eric

Hi Eric...
 

So very glad to see you...I'm so happy to hear you are hanging in there..
I had no idea who elTaco Dave was..I thought Dave WV was talking about himself..
And well ...never mind what I thought..sorry I have some major catching up to do...
But so very glad to see all of you guys..Lisa

I made a post yesterday to Linda Lisa and it wasn't posted. Another case of moderators who have no clue about what they are moderating!,

Hi Dave..I'm not sure what your talking about...but are you sure you hit submit ?
I've had post disappear because I hit the wrong button ..
If you do feel there was some type of problem other than that..did you PM a mod.?..Lisa

Hi everyone,
I was just looking at new posts and this caught my eye.

DaveWv- were you meaning here on this forum- BT2?

[I made a post yesterday to Linda Lisa and it wasn't posted. Another case of moderators who have no clue about what they are moderating!,]

If the mod team {I'm one} takes an action with a post here { on this site} we always send a PM to the person explaining why.
Usually any actions are discussed by the team and a PM sent first to the poster to give them time to make a change.
About the only time we do an instant action is in the case of very nasty words, porn, spam ect. But a PM would still be sent after.


I myself have thought I submitted a post already when I had hit the back button instead.

or like me...hit the preview post button instead of submit. *poof* it goes into the land of Curious' Goofs.

I didn't post spam, porn or anything nasty. Imagine that, define nasty. LoL
I didn't receive a pm from a mod unless Linda Lisa is a mod. If I did make the mistake myself I apologize.

Are the posts here screened before making the board because I noticed when I click submit it often doesn't show up immediately.

I'm not a member at the original brain talk I'm banned forever. Forever is a look time.

Hi Dave..I was just wondering in my post on this thread if you clicked the wrong button when trying to hit submit...it happens to me every now and again ..Lisa
PS... I'm not and have never been a mod on "any" forum.. it would be way too hard of a job for me..I like the open idenity of mods here..because without it sometimes there are rumours of who is and is not a mod...

your post wasn't removed by a mod. i don't know where it might have gone. we have a mod forum and when we move posts...they go there. but....like jo said, befoire we move a post...we discuss it as a team. and we haven't been discussing you. :D

no posts are screened either. maybe just a cyber glitch? i'm sorry you felt that any mod just *poofed* your post without pm'ing you. but i;m glad you brought it up, so we can be watching for any glitches.

Bobby,
Could you make your font a little bigger!?! LoL

just hand bobby a beer...i bet he can bold it and change the colors too. :p

from my understanding, some of the emails addy's don't always work. like aol. but many who where banned have re-joined.

but i hope you still post here. :)

I notice the thread I started got locked for no apparent reason....

I think I'm done with OBT....

Hi Doctor Paul

So why are you saying that here and not at the old site. You have to understand the mechanics of David's warped mind and you will see why he closed the post.

The last comment there was a glowing one from a member of both sites that put him in a different light than I see him and he closed it to bring attention to it and have it read by all who are curious.

Got me to do it even. So it works for him.

Devious devious devious and some have fallen for it hook line and sinker.

They and not him alone are the ones who will keep the site down as they are also the ones who follow him and John around with the thank you thank you you are a saint etc etc etc to nausea.

Guess thiis is where I should put IMHO so no one will take the blame for what I write save me.

Is that devious as well? lol

I'm just a bit perplexed by this hero-worship of JL. Not that I'm jealous of course!!!!!

I have certainly had some nice things said to me and about me by people who use BUILD, but I also hope that if I really cocked something up they'd tell me so. OBT does not seem like an organistion mature enough to take criticism, and I find their banning trigger-finger way too twitchy....

Hi..I like the whole open discussion thing here..in regards to misunderstandings..on this thread alone we have had two..one where I completely misintrepreted JoelC's post..and one where Dave didn't know what happened to his...
It could have gotten all blown out of proportion ...but it didn't because the Mods explained how things worked..and that they did not remove it...
Sometimes we are going to make honest mistakes here..occassionally even the mods may as they are only human too..but the "chance" to discuss things to me is a very good thing...Lisa

Shades of what I put on Feedback.

I guess I was taken in by the fact it was the only site for so long and let the hero worship go by.

You wouldn't want it Paul you have character and honesty and that is the true making of a man.

But I am not in love with you but I do love the way you care for other human beings.

Stand tall..............or nuts there goes the song that will haunt me all day


Sttttanddddd ttttallllllll da de da

Hi Paul..
Here are my two cents on the issue...( and they are probably worth just that 2 cents)
OBT was very unique when it first started ...I feel JL did alot of good things.. I also feel he is a compassionate person..and he will always have a large following..
However Braintalk also changed as it grew..once what were fairly liberal open discussions before...became at times very tightly moderated ones...while at the same time in other cases there were still some liberal discussions and some criticism allowed..
To me what made it special when it started... was the open discussion and the compassion of not only the members but the adminstrators and moderators..( although many of us remember the days when there was no moderators on BT at all --except JL)....and it is obviously to big for that now...
But, I feel OBT is losing the open discussion and compassion for the most part..I mean there were "literally" years when not a single person" with ALS" was ever banned.....back then threads were just simply locked and words of reminding folks that this community was about compassion were left if a thread started getting out of hand...rarely even that was done at the ALS forum..then boom half a dozen or so people were banned some for merely questioning publicy why another was...
Right now fear.of being banned is why alot of people handled things through back door e-mail gossip and posts on other forums such as this......which to me just leads to more problems for OBT...there are also people simply afraid of criticizing BT at all...for that matter posting their thoughts on just about anything...
Challenging decisions and public criticism though is just not tolerated at all now there ..that makes little sense to me as personally I'd prefer my laundry to be aired in the forum on which I post..instead of many others..but as the rules are being enforced right now its walking a tightrope to openly discuss "any" problems there...
Maybe...and I don't know..if many of problems that have arisen there..because the forum is so big now..as Braintalk is/was one of the largest forums on the internet of its kind it is hard to say....
I post at both forums. though I am more careful in choosing my words there and what I feel I can safely say....as I have friends that post at both places..and I don't like to leave newbies hanging out to dry there..though at one point I got sick of everything and said to heck with it all ..which was bad on one hand as there are many people I missed ...but which in a way was good because my time on the computer took away my time from my family and problems were created due to that which I did not realize..plus I was posting there too much anyway and I did not want the forum to become to centered around my husband and I...as there are better caregivers out there than I..and everyone with ALS is just as important. I have a tendency to be to vocal and opinionated ..if you haven't noticed...but hopefully though I can find a better balance...that and keep our new computer system running..I can sympathize with JL there...Lisa

we can dance http://i23.photobucket.com/albums/b3...67217124_l.gif

John Lester was asked to start Braintalk by his boss at MGH and it grew into what it was by the fact it was unique and the only one available for the neurological community.

There were no moderators and when asked if they were needed and wanted a lot of people jumped on the bandwagon and bellowed yes.

So moderators they got and the fun ended and the troubles began. They were volunteers from the site and you could sit back and see who they were and what they were about and as moderators they were a weird group. So some left and some remained and formed their own little clique. then they began to find it hard to be quiet and not let people know who they were . they lost their anonymity as moderators and also lost their ability to be members at large.

So they were stuck in a quandary and lo and behold one member stood out from the rest in his flattery and gratuitous attitude and writings to John and you could see where that was heading. Well lo and behold he soon turned into an 'administer' of all things.

That then was the ending of Braintalk as we had all known it. it became a dictatorship and all contact with John was lost to anyone who dared to voice a nay.

It began with just authoritarian notices and then closing of posts and when that didn't suffice this mans ego the banning began.

Then it was shut up and say yes mam and yes sir or leave. I chose to stay but it didn't do me any good.

They tore down the Berlin wall to illustrat4e freedom and now are building a wall between the United States and Mexico but the wall between the members and their friends on Braintalk was the interim project.

Then John took on the task of bringing people who have Aspergers and Cerebral Palsy into the main fold of the WWW and it has garnered the majority his attention and time. Don't get me wrong that project is the utmost admirable thing that Braintalk brought about.

But the members were left in the hands of a fanatic.

Now John has put in another 'administer' in our very own Mike Weins and while he seems to be more approachable I can't believe he will be effective unless he has John's authority over David.

That will be interesting to watch and see.

I have completely gone off the main subject here of winning new members to this community. It is not right to go to other sites and entice them away so where do we go for new members.

We have to devise a method or plan to bring them in.

Please give me some ideas. Cals and pals only please as this is their site and they are the ones to decide.

I am just offering to help them in whatever they want to do.

Won't be back for a few days as I am going to be out of town but I will return Monday night for the hundreds and hundreds of answers this brings. lol


Here ils one thought what if we have an ebay sale for Alstdf

Thelma,
I was one who welcomed moderators..and still do...I feel when sites get large...it is too big of a job for one person alone..I saw one site completely ruined by spam..remember Doug Eshelsman's site after his passing...moderators have a tough job...and it would be one too hard for me with my own strong opinions so I certainly never volunteeered..good moderators are typically very flexible and impartial thinkers...and I think this site has some great ones...
Every since I was a member of OBT in 2000.... JL did the job alone at old Braintalk for many years .... in my opinion he was darn good at moderating the site by himself in the beginning .. but as it grew it was too much for him to do alone.....I don't think the idea of more moderators was the problem...I think it was when one or two got overzealous banning PALS with no explanation ..it then became a big issue at that particular site..
As far as a way to bring people all in to one particular site..after months of old Braintalks down time..I doubt seriously it is going to happen...I don't know if it's neccesarily a bad thing either...some people left boards for the most part and spend most of the day living every day life...just popping in occassionally..while others have gravitated toward one site or another...but many at least pop in on "various" sites to read them like newspapers...whether they choose to post or not...
Most successful boards I have seen do have moderators, for examples, the TdF site is moderated, but fairly liberally, so is Build-UK and so is this one...others are more heavily moderated but still seem to thrive to a degree..
Serious breakthroughs in the disease may pull people in...but I've been way too far down that road to get excited too quickly anymore...everyone of us who has been around awhile has become a skeptic...
Still if someone has a problem on old BT, this site or any of the others ..undoubtly at least one person will post to try to help them out...My husband and I are eternally grateful to those who helped him..and I will continue to do my best to help others on various sites...Lisa

This is a trailer for a documentary on Avichai Kremer and his battle against ALS (Lou Gehrig's disease).
« Prev -
http://video.google.com/videoplay?do...patients&hl=en



Race Against Time
What would you do if you were told you only had three years left to live? ALS or Lou Gehrig's disease is a fatal illness that kills thousands of people each year and yet there is still no cure. This horrible disease can strike anyone, anywhere, anytime. Prize4Life was started by an ALS patient who wants to see a treatment in this lifetime. Prize4Life is the world's largest prize contest to accelerate ALS research. Go to www.prize4life.org to join the fight!
http://video.google.com/videoplay?do...patients&hl=en


A Midwinter Night's Dream
A Midwinter Night's Dream is an annual charity fundraiser held by The Northport High School chapter of the National Honor Society that supports Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease) research.

Grand Total Raised [so far]: $264,000


http://video.google.com/videoplay?do...patients&hl=en