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Thanks, good luck with your move. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of spencermary20Sent: Friday, March 18, 2011 6:57 PMTo: Soundsensitivity Subject: Re: Non-Profit Hi, Kathy,Dorothy Flint is the other person in the DC area. I have to say that I'm no interested in being involved with setting up the non-profit. I hope to be moving out of the area within the year. I wish you the best!Thanks for asking though.Best,> >> > > I think that we would have to start a Non-Profit group and bank account and that way everyone can write their checks payable to it. I work doing bookkeeping and accounting and we have a lot of non-profit clients. I don’t personally work with the non-profit clients, but my boss does and I’m sure she would help me make sure it is set up correctly.> > > > > > > > > > I think that this would be really important to finally get a financial base going to fund possible research (on a small scale) or do things like mailings to create awareness and fundraising. I also do mailings to mainly Republican/Conservative groups who are wealthy, and might be able to get lists of people who we could do a blanket mailing to. Odds are many would recognize the symptoms in someone they know or even themselves.> >>

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Thanks, good luck with your move. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of spencermary20Sent: Friday, March 18, 2011 6:57 PMTo: Soundsensitivity Subject: Re: Non-Profit Hi, Kathy,Dorothy Flint is the other person in the DC area. I have to say that I'm no interested in being involved with setting up the non-profit. I hope to be moving out of the area within the year. I wish you the best!Thanks for asking though.Best,> >> > > I think that we would have to start a Non-Profit group and bank account and that way everyone can write their checks payable to it. I work doing bookkeeping and accounting and we have a lot of non-profit clients. I don’t personally work with the non-profit clients, but my boss does and I’m sure she would help me make sure it is set up correctly.> > > > > > > > > > I think that this would be really important to finally get a financial base going to fund possible research (on a small scale) or do things like mailings to create awareness and fundraising. I also do mailings to mainly Republican/Conservative groups who are wealthy, and might be able to get lists of people who we could do a blanket mailing to. Odds are many would recognize the symptoms in someone they know or even themselves.> >>

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ISSA does have a better " ring " (so to speak!)  than the aforementioned!

 

I, too, have set up four or five NPOs and currently serve on the boards of three.

It is not that hard and there are states that are better situated to set one up in than others.

The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.

The main points would be:

1) decide national or international

2) decide mission; educate? inform? support? research? all 4?

3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA)

4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.

5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.

6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.

If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.

Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.

Food for thought....and you can see, I have thought about this quite a bit.

Dr. Marsha

Audiologist

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Let's do it!!!!!Count me in...............................

Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCP

Telephone 01488-685151/ 686881

info@...

www.lastingchanges.co.uk

To: Soundsensitivity From: Oregon7@...Date: Mon, 21 Mar 2011 00:04:38 +0000Subject: Re: Non-Profit

I, too, have set up four or five NPOs and currently serve on the boards of three.

It is not that hard and there are states that are better situated to set one up in than others.

The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.

The main points would be:

1) decide national or international

2) decide mission; educate? inform? support? research? all 4?

3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA)

4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.

5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.

6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.

If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.

Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.

Food for thought....and you can see, I have thought about this quite a bit.

Dr. Marsha

Audiologist

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I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.

---------------------------------------------------------

♥

" Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥

http://www.caringbridge.org/visit/sarahmae

 

I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?

Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:

what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptoms

How does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?

What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not.

My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3

Sender: Soundsensitivity

Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >

ReplyTo: Soundsensitivity

Subject: Re: Non-Profit

 

I, too, have set up four or five NPOs and currently serve on the boards of three.

It is not that hard and there are states that are better situated to set one up in than others.

The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.

The main points would be:

1) decide national or international

2) decide mission; educate? inform? support? research? all 4?

3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA)

4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.

5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.

6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.

If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.

Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.

Food for thought....and you can see, I have thought about this quite a bit.

Dr. Marsha

Audiologist

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I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.

---------------------------------------------------------

♥

" Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥

http://www.caringbridge.org/visit/sarahmae

 

I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?

Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:

what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptoms

How does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?

What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not.

My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3

Sender: Soundsensitivity

Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >

ReplyTo: Soundsensitivity

Subject: Re: Non-Profit

 

I, too, have set up four or five NPOs and currently serve on the boards of three.

It is not that hard and there are states that are better situated to set one up in than others.

The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.

The main points would be:

1) decide national or international

2) decide mission; educate? inform? support? research? all 4?

3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA)

4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.

5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.

6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.

If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.

Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.

Food for thought....and you can see, I have thought about this quite a bit.

Dr. Marsha

Audiologist

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I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.

---------------------------------------------------------

♥

" Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥

http://www.caringbridge.org/visit/sarahmae

 

I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?

Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:

what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptoms

How does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?

What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not.

My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3

Sender: Soundsensitivity

Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >

ReplyTo: Soundsensitivity

Subject: Re: Non-Profit

 

I, too, have set up four or five NPOs and currently serve on the boards of three.

It is not that hard and there are states that are better situated to set one up in than others.

The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.

The main points would be:

1) decide national or international

2) decide mission; educate? inform? support? research? all 4?

3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA)

4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.

5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.

6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.

If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.

Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.

Food for thought....and you can see, I have thought about this quite a bit.

Dr. Marsha

Audiologist

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I just want to get a way of payment so we can send 3 people to see Dr. Amen.  That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit.  Sometimes it sounds easy and other times it sounds impossible.  I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc.  I am willing to contribute if someone gets one started.  I just really think it is important for us to check out Dr. Amen and what he has to offer.  But I don’t want the financial burden to fall on those people.  I think it is pretty cheap research if it is only $2500-$3500 per person.  We could easily contribute $50-$100 a person and be able to send them.  (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ " Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I just want to get a way of payment so we can send 3 people to see Dr. Amen.  That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit.  Sometimes it sounds easy and other times it sounds impossible.  I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc.  I am willing to contribute if someone gets one started.  I just really think it is important for us to check out Dr. Amen and what he has to offer.  But I don’t want the financial burden to fall on those people.  I think it is pretty cheap research if it is only $2500-$3500 per person.  We could easily contribute $50-$100 a person and be able to send them.  (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ " Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I just want to get a way of payment so we can send 3 people to see Dr. Amen.  That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit.  Sometimes it sounds easy and other times it sounds impossible.  I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc.  I am willing to contribute if someone gets one started.  I just really think it is important for us to check out Dr. Amen and what he has to offer.  But I don’t want the financial burden to fall on those people.  I think it is pretty cheap research if it is only $2500-$3500 per person.  We could easily contribute $50-$100 a person and be able to send them.  (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ " Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone

I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I am ready, willing and able to send $50 in to a fund to send someone to Dr. Amen. Could Dr. J hold it for us?If not, someone else? I have done it before for other groups and it is simple - just setting up a bank account, paying the checks in, and acknowledging receipt. I am leaving for the UK next week until the autumn, otherwise would volunteer.With regards,Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCPTelephone 01488-685151/ 686881info@...www.lastingchanges.co.uk To: Soundsensitivity From: jennyinmo@...Date: Mon, 21 Mar 2011 21:32:08 -0500Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I am ready, willing and able to send $50 in to a fund to send someone to Dr. Amen. Could Dr. J hold it for us?If not, someone else? I have done it before for other groups and it is simple - just setting up a bank account, paying the checks in, and acknowledging receipt. I am leaving for the UK next week until the autumn, otherwise would volunteer.With regards,Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCPTelephone 01488-685151/ 686881info@...www.lastingchanges.co.uk To: Soundsensitivity From: jennyinmo@...Date: Mon, 21 Mar 2011 21:32:08 -0500Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I am ready, willing and able to send $50 in to a fund to send someone to Dr. Amen. Could Dr. J hold it for us?If not, someone else? I have done it before for other groups and it is simple - just setting up a bank account, paying the checks in, and acknowledging receipt. I am leaving for the UK next week until the autumn, otherwise would volunteer.With regards,Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCPTelephone 01488-685151/ 686881info@...www.lastingchanges.co.uk To: Soundsensitivity From: jennyinmo@...Date: Mon, 21 Mar 2011 21:32:08 -0500Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I thought that might work.  I guess we have to talk to him about it.  We first need to figure out who will go see him.  I think that 3 people should go to his California clinic since it’s more established, and go at the same time period.  Are there 3 people in CA who would be interested? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of BrewerSent: Monday, March 21, 2011 10:32 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ " Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I'm very interested and am in San Diego so I would go to the CA clinic. I am saving my pennies now. Although I'm a state worker and looks like more furloughs are coming to my department in April. But I am doing all I can to get it together to go.There are some who claim his imaging is not helpful as it's not an actual MRI. Has anyone researched it intensely? I've only superficially researched it and still would like to try it.Heidi

I thought that might work. I guess we have to talk to him about it. We first need to figure out who will go see him. I think that 3 people should go to his California clinic since it’s more established, and go at the same time period. Are there 3 people in CA who would be interested? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of BrewerSent: Monday, March 21, 2011 10:32 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I'm very interested and am in San Diego so I would go to the CA clinic. I am saving my pennies now. Although I'm a state worker and looks like more furloughs are coming to my department in April. But I am doing all I can to get it together to go.There are some who claim his imaging is not helpful as it's not an actual MRI. Has anyone researched it intensely? I've only superficially researched it and still would like to try it.Heidi

I thought that might work. I guess we have to talk to him about it. We first need to figure out who will go see him. I think that 3 people should go to his California clinic since it’s more established, and go at the same time period. Are there 3 people in CA who would be interested? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of BrewerSent: Monday, March 21, 2011 10:32 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I'm very interested and am in San Diego so I would go to the CA clinic. I am saving my pennies now. Although I'm a state worker and looks like more furloughs are coming to my department in April. But I am doing all I can to get it together to go.There are some who claim his imaging is not helpful as it's not an actual MRI. Has anyone researched it intensely? I've only superficially researched it and still would like to try it.Heidi

I thought that might work. I guess we have to talk to him about it. We first need to figure out who will go see him. I think that 3 people should go to his California clinic since it’s more established, and go at the same time period. Are there 3 people in CA who would be interested? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of BrewerSent: Monday, March 21, 2011 10:32 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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Okay—so we have 2 subjects for our research—anyone else? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Tuesday, March 22, 2011 6:51 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I'm very interested and am in San Diego so I would go to the CA clinic. I am saving my pennies now. Although I'm a state worker and looks like more furloughs are coming to my department in April. But I am doing all I can to get it together to go.There are some who claim his imaging is not helpful as it's not an actual MRI. Has anyone researched it intensely? I've only superficially researched it and still would like to try it.Heidi I thought that might work. I guess we have to talk to him about it. We first need to figure out who will go see him. I think that 3 people should go to his California clinic since it’s more established, and go at the same time period. Are there 3 people in CA who would be interested? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of BrewerSent: Monday, March 21, 2011 10:32 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ " Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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I will support you Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Tue, 22 Mar 2011 15:51:17 -0700To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Re: Non-Profit I'm very interested and am in San Diego so I would go to the CA clinic. I am saving my pennies now. Although I'm a state worker and looks like more furloughs are coming to my department in April. But I am doing all I can to get it together to go.There are some who claim his imaging is not helpful as it's not an actual MRI. Has anyone researched it intensely? I've only superficially researched it and still would like to try it.Heidi I thought that might work. I guess we have to talk to him about it. We first need to figure out who will go see him. I think that 3 people should go to his California clinic since it’s more established, and go at the same time period. Are there 3 people in CA who would be interested? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of BrewerSent: Monday, March 21, 2011 10:32 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit Could the clinic set up an account for us to send money to? We may just have to start with one person at a time.Sent from my iPhone I just want to get a way of payment so we can send 3 people to see Dr. Amen. That is my goal right now—but I completely agree that we need a lot of fine tuning before we do any sort of mailings or anything. I think there has been a lot of conflicting info on setting up a Non Profit. Sometimes it sounds easy and other times it sounds impossible. I think it is important to get it started, but I don’t think I have the time to do the set up process if it entails major paperwork and trying to find a board that can meet, etc. I am willing to contribute if someone gets one started. I just really think it is important for us to check out Dr. Amen and what he has to offer. But I don’t want the financial burden to fall on those people. I think it is pretty cheap research if it is only $2500-$3500 per person. We could easily contribute $50-$100 a person and be able to send them. (If about 100-150 of us contribute—that’s only 1/10 of the group). We need to use the power of this group! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Mae Sent: Monday, March 21, 2011 9:01 PMTo: Soundsensitivity Subject: Re: Re: Non-Profit I agree with you. I had similar thoughts, but couldn't quite express them. I'm all for education and research and whatnot.. but it seems like there isn't a lot of facts to stand on.. just personal experiences. And while that's enough for ME, I'm not sure it's enough for the world.---------------------------------------------------------♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥http://www.caringbridge.org/visit/sarahmaeOn Mon, Mar 21, 2011 at 7:49 PM, wrote: I feel a need to share my concern and I am sorry for bringing up this old debate but...Shouldn't we clarify what this condition is actually called and define what it actually is before spending money and time in setting up a NPO?Yes, it is closer to clarification but, I feel we will be wasting efforts until we have the ability to define a vision and mission statement. Which in my opinion, we presently can't.Maybe expand on things like:what are the core elements of this condition? (Beyond we don't like particular sounds (and are the sounds really that selective??) )How does the sight issues fit into all of this and why only some people? Why do people feel the same symptomsHow does the tactile issues fit into all this and why not for everyone? Why do people feel the same symptomsWhy do some people acquire new triggers where others don't? And what is the link to new triggers? Is there even one?What field should it fall under? I'm concerned that we will be making claims with a NPO, claims that at this stage we can't back up... I've always said that a name isn't important to me, just the cure. But if we are going to set up a NPO, the name will define the condition.... And undoubtedly become important regardless if we wish it or not. My comments before may have been eagerly premature as I feel there is a lot of ground work to do first, but I'm happy to debate.Sent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Mon, 21 Mar 2011 00:04:38 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: Non-Profit I, too, have set up four or five NPOs and currently serve on the boards of three.It is not that hard and there are states that are better situated to set one up in than others.The IRS will be the slow point but if you have the $, not so bad. Just need around $300 usually initially.The main points would be:1) decide national or international2) decide mission; educate? inform? support? research? all 4?3) Name: I like Association of Sound Sensitivity but the acronym haha is not good. So maybe, International Sound Sensitivity Association (ISSA) 4) Choose five to nine board members who will take financial responsibility and legal responsibility and direct the first phase of the association. These should be people who are carefully selected by the group and others who can serve with level heads and kind hearts and who have some visionary capacity to make wise group decisions. This is one of the hardest parts as often people do come with their own agendas and what they want to do and when $ gets involved, it gest sticky and stickier unless the mission is extremely well defined.5) the group will need a scientific advisory committee, too, to help scope out any research and set up a way to evaluate and fund projects fairly. This is a bit complicated but it can be as small as 5 professional PhD types.6) Reporting back to the group, administrative work, etc. the NPO will need legal and accounting work from time to time as well as a point person who gets paid to manage with a board overseer to keep things tidy and clean. Finding someone to do this part gets interesting, many NPOs have founders that do that work in the beginning.If each person on this list would kick in $10 to a fund, we would have over $15000 to start up with to work on this project. Not a bad sum to begin with as mostly education and support would be initial focus projects.Good research grants are going to be $30,000 minimum as partial support and up to millions as time passes. The NPO could give some of a grant or a partial grant the way the ATA does now with tinn research.Food for thought....and you can see, I have thought about this quite a bit.Dr. Marsha Audiologist

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