Re: Setting up a non-profit for misophonia

[Guest guest]

I have a tiny, tiny bit of experience observing the way a nonprofit runs. Like

other people have said, I'll gladly donate (money as well as time, whatever I

can do), but I don't have a ton of knowledge.

But you're right, this needs to be done. Desperately.

-Kate K.

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> >> > > >>Â I need to report on the progress I Â have made with a type

of neuro-feedback. About 6 weeks ago I spent one week at Brain State Tech. in

sdale, AZ, because it

> >> > > >>came up in a list of neurofeedback practitioners in my area. It is a

bit different from some other neurofeedback practices, none of which I have any

experience with, but wantedÂ

> >> > > >>to try because of the results that have been discussed on this

site.Â

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> >> > > >>I had ten 1 1/2 hour sessions over the course of 5 days (at a total

cost of $2,000.00), where I basically sit and listen to various tones and am

hooked up to electrodes that are attached to my head and movedÂ

> >> > > >>every 15 minutes of so. Very simple  and I slept through much of

it. ( I am always tired because I have severe insomnia). Sleeping they said

would not affect the results.Â

> >> > > >>Anyway I have been hoping for some results with my Misophonia, but

have not yet felt any reduction in symptoms.Â

> >> > > >>But I have been doing much better with it because for the first time

in over 3 decades I am sleeping 7-8 hours a night of very restful sleep, for

about a month now.Â

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> >> > > >>AMAZING!Â

> >> > > >>Â I have tried everything for insomnia spent thousands of dollars

on treatments, medications, you name it, nothing would even put a dent in it.

 I did get some sleep when I usedÂ

> >> > > >>drugs, but I became addicted to sleeping pills and in time they

didn't work well. I have been walking dead for over 30 years but now sleep like

a baby.Â

> >> > > >>And my Misophonia, while still there is a bit easier to cope with

since I am not tired and stressed and am well rested.Â

> >> > > >>

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> >> > > >>I am just reporting my results here. Nothing in it for me. I hope to

eventually get some help with Neurofeedback. I may try another type and see if

that works. I am monitoring theÂ

> >> > > >>results of others on this site to see how it is working for

them.Â

> >> > > >>I do feel hopeful that there will be help for this disease in the

near future.Â

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> >> > > >>Thanks for all that goes on here. I love the help and support I get

here.Â

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> >> > > >>Mike L.Â

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[Guest guest]

I saw this topic in the archived messages and am glad to see it come up again.

If people want research into misophonia, it's inevitable that we'll need to do

this. Who will care more about understanding misophonia than the people

affected?

I don't know anything about setting up non-profits and I don't live in the US,

but I was a medical researcher for 20 years (before joining a government

regulatory authority 2 years ago). So I know a fair bit about how research is

funded, how competitive it is to get funding, and how much it helps to have

preliminary data. If we want to get things started, the most effective way may

well be to fund some pilot studies ourselves. They would provide data and

research strategies that would strengthen applications to larger funding

agencies.

I would like to see such an association able to receive donations from people

outside the US (I guess getting tax-deductable status would have to be worked

out in the other countries). Maybe set up affiliated offshoots in other

countries in time to represent the interests of people outside the US. At the

research funding stage, I would also like to see funding available regardless of

country, as good ideas are more important than location.

Liesa

>

> --- In Soundsensitivity , Lawrence <

> I have advised before on this, but I really feel that you all (all of you but

by representative) should gather forces to create a 501 C 3 called Misophonia

Association, and get the ball rolling as a non profit to represent your

interests.

>

> I have a few people that I would nominate to be on the board of directors and

who would contribute $ to get it up and going.

>

> Then yes, funding and information begins to amass with proper management, for

the purpose of discovering more.

>

> This is a critical step.

>

> Marsha , AuD

[Guest guest]

We can use international members. I would like this to be the M. Association

rather than of America, etc. It is intended to have a global focus.

MJ

> >

> > --- In Soundsensitivity , Lawrence <

> > I have advised before on this, but I really feel that you all (all of you

but by representative) should gather forces to create a 501 C 3 called

Misophonia Association, and get the ball rolling as a non profit to represent

your interests.

> >

> > I have a few people that I would nominate to be on the board of directors

and who would contribute $ to get it up and going.

> >

> > Then yes, funding and information begins to amass with proper management,

for the purpose of discovering more.

> >

> > This is a critical step.

> >

> > Marsha , AuD

>