Creating an entity for bb people

thomasthomas · Post by **thomasthomas** » Fri Oct 01, 2010 7:22 am

Hello,

In my researches I have found things related to treating tmau but I don't see any association for halitosis that gathers sufferers and doctors, scientists. I think it is indispensable for us to have a strong entity aimed at organizing collective action. What do YOU think about it?

hopelessone · Post by **hopelessone** » Fri Oct 01, 2010 7:26 am

We sooooooooo NEED this. Now where/how in the world to start?

thomasthomas · Post by **thomasthomas** » Sat Oct 02, 2010 8:10 am

The most important thing is to know what objective we want to pursue.

-Spreading information about bb.
-Finding cure about it.
-Taking into account different parameters that make halitosis multifactorial.
-Get interested, involved doctors, microbiologists, ent, gastro, etc...
-Turning haters info money givers for research, website costs:)
-Launch researches.

For that, we need (I think) a worldwide association that is thought as a corporation. The difference may be that we don't go for money, but for curing BB. For what I've seen, actions are taken but in a very individual manner, 10 members send a mail to an hospital for a special question, and it is the right thing! But it needs more coherence, more strength and logistics. An interesting idea may a corporate structure of tasks force, each one making a specific thing: public relations, fund raising, administration of the forum, advertising.

There is so much potential, so much things to change the deal. A lot of us are fed up with their life, and hopefully most of them understand that by acting interesting things can happen.
I submit the idea to people because it cannot realistically happen without them, it is collective action, a collective effort (like this forum).
You asked me how, maybe having some opinions in a free discussion with other members is a good start.
I seriously don't underestimate the strength of the group that has a common goal.

ihatethebus · Post by **ihatethebus** » Sat Oct 02, 2010 11:43 am

thomas or anybody willing..hate to be a bother but i must have missed an english class and sorry for the ''ignorance'' but whats an 'entity'

halitosisux · Post by **halitosisux** » Sat Oct 02, 2010 12:10 pm

http://en.wikipedia.org/wiki/Entity

ihatethebus · Post by **ihatethebus** » Sat Oct 02, 2010 7:49 pm

@ hal. thnks i wiki'd it earlier but could understand the mixture of words at all.. could you break it down for a fifth grader or something. e.g density is defined as mass per unit volume but a layman wont probably pick the sense to use it to explain what density is without having it broken down like saying density is a unit of how much mass is contained in a given unit volume.

catch my drift.

hopelessone · Post by **hopelessone** » Sat Oct 02, 2010 8:49 pm

i'm thinkin' 'entity' means a 'voice', a presence, that is not shushed away, like someone swatting at a gnat.....just what the OP said, a group of people comin together as one, and starting am action-oriented 'group' of one mind, and in such numbers that they will be heard, and will have influence.

A newsletter would be a useful addition, and the savvy of how to fund-rais, also part of the newsletter.

There are ways to bring awareness, and to raise money.

Divided we fall, united we stand.

ihatethebus · Post by **ihatethebus** » Sat Oct 02, 2010 11:27 pm

thanks hopelessone

hopelessone · Post by **hopelessone** » Sat Oct 02, 2010 11:41 pm

you're welcome, comrad

brightonguy · Post by **brightonguy** » Sun Oct 03, 2010 12:24 am

This is a great idea.... throw in a few high powered politicians and businessmen who suddenly get afflicted with BB and we're half way there..... MONEY=CURE..... I know BB is complicated but it can't be that complicated.... if enough smart dudes get enough research grants to figure it out I can't imagine it would take that long.

thomasthomas · Post by **thomasthomas** » Sun Oct 03, 2010 8:30 am

Hello guys,

Yes, when I say entity, I mean a voice. I appreciate your enthusiasm. But a lot of painful things must not be ignored:

-creating an entity (or association!) is difficult.
-outside people who have not interest in us finding a cure WILL try to create tensions and dislocate it, unless we are enough structured and have a common goal.
-managing ego in a group is a task in itself, it must never been forgot that it is not for an individual to shine, but for the cause we suffer from.
-as human beings we might be tempted to accept some money under precise conditions. For that reason, we should seriously think about a legal frame that prevents bad situations. A lot of associations have passed away for that reasons and because they were just cared by their hope and not their (collective) brain.
-I think money is not the more difficult, but not the more easy, let's look at the forum for example. A business plan or something like that may be a good idea. Preparation...
-What about our geographical situation? For me, our best option is to be internet present in english, spanish, etc. The strategic places. Our business plan should take into account some conditions under which we could get a visibility and why not help economically the hosting costs of web site. Because web conversion and user experience is a science in itself. And physically, who will be the boss? Why? Must there be regional bosses? What is the risk of corruption, selfish decisions based on money given that might weaken the whole entity. All that questions can seem trivial, but they're not. It's the difference between a machine that works and a failed project that was "quite good" on the paper.

Here is something that I'd think interesting for all interested people;
giving their opinion, how they would see the organization, why, how. What are your goals, what would be our best juridical structure, how to get a way of doing that is democratic but not monolithic (I think especially on people that can refuse some things based on their experiences, their personal opinions that might not be the best choices, that are not related to satisfying their own person FAST). Trying to give the more complete view and seeing things that others didn't think about.

The more thinking you put into it, the more we'll have a chance of general success.

thomasthomas · Post by **thomasthomas** » Mon Oct 04, 2010 5:47 pm

Up. Any suggestion?

hopelessone · Post by **hopelessone** » Tue Oct 05, 2010 3:28 am

1. It's time. This coming together of all of us is for a time such as this.
2. Get the legalities taken care of, and get a corporation.
3. At some point, get an awareness video made. Highlight those stars who suffered with bb, such as Clark Gable (better do some research on if we can use him as an example, as well as other well-known persons. Get a top-notch person to narrate the video, and show all ages and races of peeps who suffer through this "mysterious malady".
4. Get those research heads at Johns Hopkins Hospital involved. (Aren't they s'posed to be the best hospital in the world? Seems they're gettin' off the hook too easy on this one)
5. Get some ideas flowing on a newsletter, and how to raise awareness of this issue.
6. Brainstorm about a walk-a-thon eventually and other ways to raise money.

ThomasThomas, i don't know much about putting together a stable corportation. If i had the money, i'd start a foundation, and maked monies available in the form of research grants....that's the ticket right there...

Let's keep the ideas flowin' y'all

THanks for starting this thread ThomasThomas.

thomasthomas · Post by **thomasthomas** » Tue Oct 05, 2010 11:20 am

hopelessone: for you, what would be the goal of that association, or foundation?

I think that getting money is not hard when you have your plan, and a lot of people.

hopelessone · Post by **hopelessone** » Tue Oct 05, 2010 2:00 pm

the goal of the foundation would be to bring awareness, and to challenge the medical and scientific community to step up to the plate and research this malady, and to be a support network for sufferers of this "mysterious", forgotten, ignored condition.