Community & Forum Feedback Discuss ideas and offer feedback about our community here. It's a also a place to ask any questions you may have about the community itself.
Our Community Guidelines.


advertisement
Reply
 
Thread Tools Display Modes
Old 08-24-2006, 06:26 AM #1
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default I do think we will eventually have to take up the question--

--of what to do about keeping the Braintalk communities alive, assuming they can be resuscitated.

My take on this is that while JL and others had done an admirable job at developing and nurturing the Braintalk boards, they have grown to the point that they need more than one person, or small group of people, to maintain them. There have been several outages, both large and small, over the last several years, and these need to be prevented, as the cost to the people who use the site--and with lurkers, linkers, etc., that rises into the hundreds of thousands worldwide--is enormous.

And I'm not just talking about the costs of not being able to interact--Braintalk is the world's largest neurological database, with info that cannot be accessed all in one place at any other website. As such, it is relied upon by doctors and researchers as well as patients and caregivers. Think of where THOSE people would be without JCC's Gluten File, Rose's B12 info, Mrs. Doubtfyre's supplement info--and the list goes on and on.

I have seen hints of a proprietary attitude about Braintalk among the moderators and JL occassionally; I suggest that once a board grows this big, even if one has originated it and nurtured it, one cannot morally say that one really "owns" it any more, even if one is within one's legal rights to still make that claim. Therefore, it might be prudent at this time for Braintalkers to urge that JL perhaps aid in setting up some type of governance board, beyond the moderators, and including technical experts, to prevent these outages from ever happening again. It may even be that the day-to-day monitoring of the site needs to be in the hands of such a board, which might even need to include paid staff, working at it full-time and with full-time responsibility. This would enable JL to pursue other projects, or travel, without that resulting in such long period of downtime if something fails.

Commentary is invited.

Last edited by glenntaj; 08-24-2006 at 06:30 AM.
glenntaj is offline   Reply With QuoteReply With Quote

advertisement
Old 08-24-2006, 07:40 AM #2
newbie newbie is offline
Junior Member
 
Join Date: Aug 2006
Posts: 49
15 yr Member
newbie newbie is offline
Junior Member
 
Join Date: Aug 2006
Posts: 49
15 yr Member
Default

Quote:
Originally Posted by glenntaj View Post
which might even need to include paid staff, working at it full-time and with full-time responsibility. This would enable JL to pursue other projects, or travel, without that resulting in such long period of downtime if something fails.

Commentary is invited.

but how would the paid staff be paid?

Especially full time staff
newbie is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 08:35 AM #3
stevem53's Avatar
stevem53 stevem53 is offline
Senior Member
 
Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
stevem53 stevem53 is offline
Senior Member
stevem53's Avatar
 
Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
Default

Maybe donations for a back-up system..I dont know exactly what was involved for Dr John to create this website, but Ive noticed that it not only looks like the original BT but works smoother and faster than BT-1..There were several glitches in BT especially after some software updates, and people were complaining about BT being very very slow and some users could not get on the site at all..I was not surprised when it crashed
__________________
There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK
stevem53 is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 08:50 AM #4
Wittesea's Avatar
Wittesea Wittesea is offline
Senior Member
 
Join Date: Aug 2006
Location: East of the River, in the Quiet Corner
Posts: 1,238
15 yr Member
Wittesea Wittesea is offline
Senior Member
Wittesea's Avatar
 
Join Date: Aug 2006
Location: East of the River, in the Quiet Corner
Posts: 1,238
15 yr Member
Default

Quote:
Originally Posted by newbie View Post
but how would the paid staff be paid?

Especially full time staff
That's easy - ad revenue.

If John Lester approached the big drug companies and asked them for sponsorship, then I bet BT would have plenty of revenue to pay at least one staff member.

Think about it - the ads would be the same size as the google ads that have been at the top of BT for years, but instead of various ads from google they would be ads for medications that are specific to the forum - pain meds at the chronic pain forum, epilepsy meds on the epilepsy forum, etc....

Google ads pay next to nothing - but if all of braintalk was sponsored by a drug company (or several drug companies) we wouldn't notice a difference because the ads would be the same size and in the same place, but the income generated would be larger than the few pennies we get from google ads, and the ads would be more tailored to each forum (no more "donate your used car" stupid ads that make no sense on a health support forum).

If BT was sponsored by a drug company, John would still maintain comtrol, the drug company would get a tax write off for their donation/sponsorship because BT has a non-profit orginization status, and the BT members would notice nothing diffferent (other than different ads in the place where the google ads now are).

My 2 cents.
Wittesea is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 12:31 PM #5
newbie newbie is offline
Junior Member
 
Join Date: Aug 2006
Posts: 49
15 yr Member
newbie newbie is offline
Junior Member
 
Join Date: Aug 2006
Posts: 49
15 yr Member
Default

Quote:
Originally Posted by Wittesea View Post
That's easy - ad revenue.

My 2 cents.

I like this idea.

It would be a help to get at least ONE fully paid full time worker. then it would mean John would have more time for his full time work.

anyone else got any other ideas to make up funds?
newbie is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 01:03 PM #6
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default Glenn, I see that you have concerns about BT's future,.

BUT, I have to let you know, that I'd tried over a year ago by posting directly via BT pm's to those who could devise a fundraising plan apply for and get grant/corp monies: and not be beholden other than proof in the pudding! I've had extensive exper in non-profits and have help many via grants to same. The planning, board development, fundraising sides are all important to ensuring the best such a site can support. I RECEIVED NO/ZERO response! I believe that all the wonderful folks are soo busy here 'doing what they do' that long term survival is not an issue at any immediate moment.
Many BT folks have been adrift and the words on BT2 really home in on how much the site[s] mean to so many.
I recommend two things: One, put our dollars where our mouths are! -IF you can! The 'puters, software, maintenance, back-ups, expansions due to need all require warms bodies, and accessories to allow the warm bodies 'to do their thing!' Bodies and $ make this world go round.
TWO: As for boards: very old axiom-GIVE, GO [get] or GET OFF! While I've long been in contact w/many non-profit development assistance groups[for a long time], I've still a few names, and can refer descreetly to best advantage of whoever-whats to get the most bucks for the least effort. Good board/committee/fundraising members from the corporate or business sectors don't necessarily have to be inflicted-you know, some may just have a relative and want to 'help'. There are good people out there, and to not get and use the right kinds of smarts is plain out-crisis management [no insult intended to John or others]. IF you want f/t mods and all that entails, you need the GIVE a part of yourself to make it happen... And reserves for the ever increasing intrusions into such a big system.

In the end, Glenn, what I see you asking is for the 'institutionalization' of BT, as it is, and maybe can be. There are a LOT of folks all around the BT Communities who have resources that can be had for the asking...just need to point-em in the rite directions!.
OK I've told you I can help in the planning and development aspects. What about YOU or others?
Don't complain......DO! - j
DocJohn, and John L I think you may hear the strident sounds of BT withdrawal! SOoo?

[Sides, you really gotta consider that this is a WHOLE boodle cheaper than Therapy!] - good thoughts to all! - j

Last edited by dahlek; 08-24-2006 at 01:12 PM. Reason: clear up spelling and edits
dahlek is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 01:16 PM #7
DiMarie's Avatar
DiMarie DiMarie is offline
Magnate
 
Join Date: Aug 2006
Posts: 2,871
15 yr Member
DiMarie DiMarie is offline
Magnate
DiMarie's Avatar
 
Join Date: Aug 2006
Posts: 2,871
15 yr Member
Default Growing up and out

This by far has been the most trumatic outage for so many of us. The last one we needed major equipment upgrade and through donations there was an abundance of funds there to hopefully to maintain the system. John grew up and expanded out from MGH to his new endevour that requires him to trvel.

I agree with so many, if there are 50,000 me4mbers to BT, there are easily that many lurkers and others that find our topics through searches.

So it makes sence to have sa taff, utilize ad's, it is a 501 3C, or whatever the non profit is, so it should be viable to have maintance for the system.

I also agree with the first poster of the moderators. I think John tries to rely on them, at many times they handle matters fine and swiftly. But, unless a moderator is familar with the board they would moderate; to know the regulars, from those who use more than one user name not for anonymity, but rather to troll, resulting in flaming. To not fully comprehend the family structure on each board, when intervention measures are taken to reslove problems,it can lead to harsh unsupported decisions.

We are growing out of a project to a major part of many peoples lives they count on.
I hope that the old information on BT can be safetly retrived, and still there valuable to so many in need of it, now and in the yeears to come.

Yes, like the B-12, the various others that had help from something not so known, something as small as a support wrap, to a recommendation to watch for harmful side affacts are so valuable.
Good post.
DiMarie is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 02:35 PM #8
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Post Board-ruled is a great idea!

It's true that there was no lack of funds the last time the issue came to the attention of the membership. Yes, the D___ C____s have oodles of money, and I don't want to start a debate on how or why they have so much nor try to describe to the innocent what is the extent of their powers. So, although DC do do some good with me-too drugs that don't take too much work, aren't necessarily safe, and produce huge short-term revenue, their neglect of other sectors of the market would put me outside the group of those willing to support them with their personal anguish and dreams.

Back to Braintalk. I totally agree that this is a system that has grown well beyond playing with avatars, and JL might not have realized what he was pledging when he made all those heartfelt promises. He will have to trust some staff as we have trusted him all these years. "I was travelling" can't mean that there were no telephones, fax machines, radios, or computers, or that the man was bound and gagged. Busy is something I have seen and been, and something no one should be who has not been able to trasfer his position of trust to others. I'm sorry John, you have done beautifully with your dreams, but, you see, they came to life, and they hurt and bleed and cry without their own kind. We'll still love you if you're not all-powerful any more [and by all-powerful I mean you can't do it all]. Not even God gets notice for that any more,[i.e., certain theological circles are tending toward an omnipresent but not omnipotent God, but that's another subject, LOL], LOL.

Jaye

Last edited by Jaye; 08-26-2006 at 02:06 PM. Reason: to clarify (in orange)
Jaye is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 02:59 PM #9
Wittesea's Avatar
Wittesea Wittesea is offline
Senior Member
 
Join Date: Aug 2006
Location: East of the River, in the Quiet Corner
Posts: 1,238
15 yr Member
Wittesea Wittesea is offline
Senior Member
Wittesea's Avatar
 
Join Date: Aug 2006
Location: East of the River, in the Quiet Corner
Posts: 1,238
15 yr Member
Default

What about charitable foundations?

Almost every millionaire has their own charitable foundation so that they can give away money to worthy causes and get tax breaks. I'm not just talking about the mega-millionaires or the famous millionaires (like Oprah and Bill gates and Ted Turner) I'm talking about the run of the mill average millionaires who no one hears much about because they aren't famous.... but they have money and they run charitable foundations to give money to non-profit orginizations for the tax break.

So what about finding a list of the millionaire-run foundations who give money away and asking any/all of them if they would be interested in supporting braintalk?

And let's not forget all the government grants that are available to non-profit orginizations.


BrainTalk could have gotten $$ and funding a long time ago -- but as someone else pointed out, there was no one looking for the funds, applying for funds, or doing anything about it.... now maybe that is because of time constraints, or maybe because there is no one in official capacity who knows how to do these things. If that's the case, then we need to find someone who knows how to do it and has the time to do it -- several BT members have expressed that they have time and ability, but to my knowledge no one in official capacity ever took any of these members up on their offers to help.

All I know for sure is that an orginization as large as BT with so many people who rely on BT should not be offline for so long. Whether BT needs funds to keep the software/hardware working properly, or BT needs funds to pay a staff, or both -- Braintalk needs to do whatever is necessary to ensure that a crash like this never happens again.
Wittesea is offline   Reply With QuoteReply With Quote
Old 08-24-2006, 03:04 PM #10
Jane Jane is offline
Junior Member
 
Join Date: Aug 2006
Posts: 77
15 yr Member
Jane Jane is offline
Junior Member
 
Join Date: Aug 2006
Posts: 77
15 yr Member
Default

As a not for profit organization, BT has had a governing/working board for quite some time. It is my understanding (whether true or not) that David first "came on board" in the capacity of developement/fundraising.

A number of the recomendations that have been discussed, have been implemented. They were put in place as it became evident that JL would not be as accessable as he once was. I would be very slow to assume that the existing problems are driven by John's ego.........real or imagined.
Jane is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 03:21 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.