Getting research done on our problem -- contributing to a fund

General Discussion Media & Awareness
#1

Hi, Everyone. I am a new member here - will post my story soon.

I have a proposition to all fellow sufferers.

Before telling you my proposition, I want to express my gratefulness to Mew for all his efforts and contribution. Thank you, Mew, for all you have done - we all owe you so much.

My proposition is following:

Let’s organize our efforts to push and press medical community to conduct a full scale research to find out the root causes of our problems. Here is the way we can do this. Most of us work full time and cannot devote much time to addresing our problem. At the same time, quiting a job and concentrating on solving a problem is not a solution to most of us, as this problem is not likely to be resolved soon and we need to have money to live. Therefore, we can contract several people to represent our interests and push medical community to conduct a study. There are 1400 users in this forum. If each of us contribues monthly about $100, we will have $140 000 per month.

We can contract several people to do the job full time and speed up the process. Preferably, our representatives must be one of us, sufferers, and one of long-time users of this forum, so we trust him. He must also have a very good understanding of our problem, so he can confidently speak and persuade medical professionals.

He/they could report to us monthly about the work they have done and results, so we are confident our money is used properly and there is progress. After montly reports, we could send contribution for the next month.

In my opinion, it would be ideal if Mew could take a job. Everyone trusts him and he has a very good understanding of our problem. But if he declines, I will understand him - he alreasy done so much.

I am, personally, ready to pay more if someone like Mew could take a lead and help us to recover, at least partially.

What do you think?

#2

I totally agree. I think we should ask mew if he could appoint someone to be in charge of a bank and if we can get enough contributors we could push this thing on a bit. It might be a big ask though, and surely Mew has brainstormed such Ideas as he has been a total hero in what he has done for us.

#3

We’d need an attorney to set up a non profit for starters and would need funds to cover the attorney fees and filing costs. You’d have to figure out which state it would be most benefical (if we do it in the US) to file as a nonprofit corporatation and that doesnt necessarily mean we could get federal 501(3)© status. Otherwise, I’d assume funds raised would be subject to federal taxes.

#4

Surely there are some sufferers who are very financially well off who could get the ball rolling? I know if i was rich id be throwing everything i could at trying to get my health back and finding a solution for our problem, what good is all that money if you dont have your health…

I find it hard to believe all the guys on here are just average Joes living off the average wage feeling helpless about this situation.
Where are all the high rollers who wanted to keep their hair??? They could be throwing millions at this.

And surely someone here has a relative or close friend who is an attorney who would be willing to assist us get something like this started?

#5

I’d be the same.

You just never know who’s working behind the scenes…