RE: Letter writing campaign

[Guest guest]

Count me in.I am pressed for time but will see what I can put together over the weekendSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 9 Feb 2011 09:16:58 -0500To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Letter writing campaign We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

Count me in.I am pressed for time but will see what I can put together over the weekendSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 9 Feb 2011 09:16:58 -0500To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Letter writing campaign We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

Count me in.I am pressed for time but will see what I can put together over the weekendSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 9 Feb 2011 09:16:58 -0500To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Letter writing campaign We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

Are we sure Mr. Nagler was serious about writing our representatives or was he just making a point about what we are up against as far as getting funding for research? There are much bigger groups with health problems getting ignored, look at what a big public shame campaign to get 911 emergency workers funding for their continuing health problems. To: Soundsensitivity Sent: Wed, February 9, 2011 8:16:58 AMSubject: Letter writing campaign

We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

Are we sure Mr. Nagler was serious about writing our representatives or was he just making a point about what we are up against as far as getting funding for research? There are much bigger groups with health problems getting ignored, look at what a big public shame campaign to get 911 emergency workers funding for their continuing health problems. To: Soundsensitivity Sent: Wed, February 9, 2011 8:16:58 AMSubject: Letter writing campaign

We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

Are we sure Mr. Nagler was serious about writing our representatives or was he just making a point about what we are up against as far as getting funding for research? There are much bigger groups with health problems getting ignored, look at what a big public shame campaign to get 911 emergency workers funding for their continuing health problems. To: Soundsensitivity Sent: Wed, February 9, 2011 8:16:58 AMSubject: Letter writing campaign

We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

I am thinking that we need to aim our arrows at the right target.

It seems to me that we would benefit from some kind of Task Force Activity at

the American Academy of Audiology. I suggested last year to English,

outgoing President, that we form such a task force for Hyperacusis. She was

quite supportive.

I should imagine that the AAA will be receptive to such a Force, depending on

who drives the engine and who is on the committee.

Sound sensitivity would surely fall under the major considerations in that area,

and we could be sure of some voices there via the audiologists who are preparing

for the Virtual Event.

There are now 7 of us, gathered to prepare for this, and I think that might be a

good first step.

A larger more collaborative effort should also occur with the medical

professionals from various fields, neurology, psychiatry, and auditory function,

perhaps others, as time passes.

I am personally not sure how writing my State Senator is going to help because

when they go looking to see what is out there, etc. there really is very little

in the published world or the medical world, i.e., nice clinical data on cases,

numbers, etiology, well, not even a decent definition, really.

Our best shot was Dr. Brewer, prior to this time. We should appoint ONE person

to contact her and discover what has happened, etc., what could be done, etc.

etc.

Let's work in cooperation.

Dr M

>

>

>

> We have definitely grown since our last letter writing campaign and there

> are many new, energized people. How many would like to email/write letters

> regarding this condition and how it affects your life? We can send them to

> several people again, and even to our representatives as Mr. Nagler

> suggested.

>

[Guest guest]

I agree that our problem is very small compared to other very serious health

problems that are not being addressed. Writing a Congressman or a Senator at

this time would not be effective. I live in DC and don't have a representative,

so I could not participate anyway ( " taxation without representation " ).

Renewing efforts to the NIH sounds better or within the sound/hearing specific

professional community than aiming too high to only be met with indifference or

worse - laughter.

>

> Are we sure Mr. Nagler was serious about writing our representatives or was he

> just making a point about what we are up against as far as getting funding for

> research?

>

> There are much bigger groups with health problems getting ignored, look at

what

> a big public shame campaign to get 911 emergency workers funding for their

> continuing health problems.

>

>

>

>

>

>

> ________________________________

>

> To: Soundsensitivity

> Sent: Wed, February 9, 2011 8:16:58 AM

> Subject: Letter writing campaign

>

>

>

> We have definitely grown since our last letter writing campaign and there are

> many new, energized people. How many would like to email/write letters

> regarding this condition and how it affects your life? We can send them to

> several people again, and even to our representatives as Mr. Nagler suggested.

>

[Guest guest]

I agree that our problem is very small compared to other very serious health

problems that are not being addressed. Writing a Congressman or a Senator at

this time would not be effective. I live in DC and don't have a representative,

so I could not participate anyway ( " taxation without representation " ).

Renewing efforts to the NIH sounds better or within the sound/hearing specific

professional community than aiming too high to only be met with indifference or

worse - laughter.

>

> Are we sure Mr. Nagler was serious about writing our representatives or was he

> just making a point about what we are up against as far as getting funding for

> research?

>

> There are much bigger groups with health problems getting ignored, look at

what

> a big public shame campaign to get 911 emergency workers funding for their

> continuing health problems.

>

>

>

>

>

>

> ________________________________

>

> To: Soundsensitivity

> Sent: Wed, February 9, 2011 8:16:58 AM

> Subject: Letter writing campaign

>

>

>

> We have definitely grown since our last letter writing campaign and there are

> many new, energized people. How many would like to email/write letters

> regarding this condition and how it affects your life? We can send them to

> several people again, and even to our representatives as Mr. Nagler suggested.

>

[Guest guest]

I agree. At this time writing the Feds is pointless. Not to say we shouldn't do it, ie each of us shoot one off just to get people informed. However, right now let's focus somewhere that may actually be of use to us AAA Sounds good as does NIH. I know many are against but talk shows are a good idea too ie the view oprah. We need public awareness as well as medical research. Sent from my iPhone

I am thinking that we need to aim our arrows at the right target.

It seems to me that we would benefit from some kind of Task Force Activity at the American Academy of Audiology. I suggested last year to English, outgoing President, that we form such a task force for Hyperacusis. She was quite supportive.

I should imagine that the AAA will be receptive to such a Force, depending on who drives the engine and who is on the committee.

Sound sensitivity would surely fall under the major considerations in that area, and we could be sure of some voices there via the audiologists who are preparing for the Virtual Event.

There are now 7 of us, gathered to prepare for this, and I think that might be a good first step.

A larger more collaborative effort should also occur with the medical professionals from various fields, neurology, psychiatry, and auditory function, perhaps others, as time passes.

I am personally not sure how writing my State Senator is going to help because when they go looking to see what is out there, etc. there really is very little in the published world or the medical world, i.e., nice clinical data on cases, numbers, etiology, well, not even a decent definition, really.

Our best shot was Dr. Brewer, prior to this time. We should appoint ONE person to contact her and discover what has happened, etc., what could be done, etc. etc.

Let's work in cooperation.

Dr M

>

>

>

> We have definitely grown since our last letter writing campaign and there

> are many new, energized people. How many would like to email/write letters

> regarding this condition and how it affects your life? We can send them to

> several people again, and even to our representatives as Mr. Nagler

> suggested.

>

[Guest guest]

That sounds promising. I feel the same way about my government officials—they would look to the medical community for answers (if they even looked that far) and then just write it off as either hyperacusis or psychological issues. I would contact Dr. Brewer if you want me to, unless someone else had spoken with her also. Thanks so much Marsha. Sorry I haven’t been as active in this group as in the past. I had to start working full time now that my oldest is starting college. However, I will do whatever it takes if everyone wants to do a letter writing campaign. Thanks,Kathy From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 10:53 AMTo: Soundsensitivity Subject: Re: Letter writing campaign I am thinking that we need to aim our arrows at the right target.It seems to me that we would benefit from some kind of Task Force Activity at the American Academy of Audiology. I suggested last year to English, outgoing President, that we form such a task force for Hyperacusis. She was quite supportive.I should imagine that the AAA will be receptive to such a Force, depending on who drives the engine and who is on the committee.Sound sensitivity would surely fall under the major considerations in that area, and we could be sure of some voices there via the audiologists who are preparing for the Virtual Event.There are now 7 of us, gathered to prepare for this, and I think that might be a good first step.A larger more collaborative effort should also occur with the medical professionals from various fields, neurology, psychiatry, and auditory function, perhaps others, as time passes.I am personally not sure how writing my State Senator is going to help because when they go looking to see what is out there, etc. there really is very little in the published world or the medical world, i.e., nice clinical data on cases, numbers, etiology, well, not even a decent definition, really.Our best shot was Dr. Brewer, prior to this time. We should appoint ONE person to contact her and discover what has happened, etc., what could be done, etc. etc.Let's work in cooperation.Dr M>> > > We have definitely grown since our last letter writing campaign and there> are many new, energized people. How many would like to email/write letters> regarding this condition and how it affects your life? We can send them to> several people again, and even to our representatives as Mr. Nagler> suggested.>

[Guest guest]

That sounds promising. I feel the same way about my government officials—they would look to the medical community for answers (if they even looked that far) and then just write it off as either hyperacusis or psychological issues. I would contact Dr. Brewer if you want me to, unless someone else had spoken with her also. Thanks so much Marsha. Sorry I haven’t been as active in this group as in the past. I had to start working full time now that my oldest is starting college. However, I will do whatever it takes if everyone wants to do a letter writing campaign. Thanks,Kathy From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 10:53 AMTo: Soundsensitivity Subject: Re: Letter writing campaign I am thinking that we need to aim our arrows at the right target.It seems to me that we would benefit from some kind of Task Force Activity at the American Academy of Audiology. I suggested last year to English, outgoing President, that we form such a task force for Hyperacusis. She was quite supportive.I should imagine that the AAA will be receptive to such a Force, depending on who drives the engine and who is on the committee.Sound sensitivity would surely fall under the major considerations in that area, and we could be sure of some voices there via the audiologists who are preparing for the Virtual Event.There are now 7 of us, gathered to prepare for this, and I think that might be a good first step.A larger more collaborative effort should also occur with the medical professionals from various fields, neurology, psychiatry, and auditory function, perhaps others, as time passes.I am personally not sure how writing my State Senator is going to help because when they go looking to see what is out there, etc. there really is very little in the published world or the medical world, i.e., nice clinical data on cases, numbers, etiology, well, not even a decent definition, really.Our best shot was Dr. Brewer, prior to this time. We should appoint ONE person to contact her and discover what has happened, etc., what could be done, etc. etc.Let's work in cooperation.Dr M>> > > We have definitely grown since our last letter writing campaign and there> are many new, energized people. How many would like to email/write letters> regarding this condition and how it affects your life? We can send them to> several people again, and even to our representatives as Mr. Nagler> suggested.>

[Guest guest]

I’m not sure what he meant, but if we write one letter, we might as well send it to our Representatives also, although I don’t have high hopes about it. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of maikaeferSent: Wednesday, February 09, 2011 9:58 AMTo: Soundsensitivity Subject: Re: Letter writing campaign Are we sure Mr. Nagler was serious about writing our representatives or was he just making a point about what we are up against as far as getting funding for research? There are much bigger groups with health problems getting ignored, look at what a big public shame campaign to get 911 emergency workers funding for their continuing health problems. To: Soundsensitivity Sent: Wed, February 9, 2011 8:16:58 AMSubject: Letter writing campaign We have definitely grown since our last letter writing campaign and there are many new, energized people. How many would like to email/write letters regarding this condition and how it affects your life? We can send them to several people again, and even to our representatives as Mr. Nagler suggested.

[Guest guest]

I think that given Oprah’s hatred of gum chewing, she might be open to helping us.  We would need to have a lot of people send her their stories about the onset and symptoms and living with 4s.  I wouldn’t bother with “Dr.†Phil.   A member of this group—Joan—was actually on his show regarding her 4s and she got no help from him other than “you need to learn to overcome it.†Also, we established that Couric’s daughter has 4s, so maybe we can send her our letters.  Both these women are very compassionate and caring, and seem to have ties to 4s. Let’s start drafting our letters.  I think I still have mine saved from last time.  Then we’ll get addresses of who to send them to. Who’s interested??? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Wednesday, February 09, 2011 11:36 AMTo: Soundsensitivity Subject: Re: Re: Letter writing campaign I agree. At this time writing the Feds is pointless. Not to say we shouldn't do it, ie each of us shoot one off just to get people informed. However, right now let's focus somewhere that may actually be of use to us AAA Sounds good as does NIH. I know many are against but talk shows are a good idea too ie the view oprah. We need public awareness as well as medical research. Sent from my iPhone I am thinking that we need to aim our arrows at the right target.It seems to me that we would benefit from some kind of Task Force Activity at the American Academy of Audiology. I suggested last year to English, outgoing President, that we form such a task force for Hyperacusis. She was quite supportive.I should imagine that the AAA will be receptive to such a Force, depending on who drives the engine and who is on the committee.Sound sensitivity would surely fall under the major considerations in that area, and we could be sure of some voices there via the audiologists who are preparing for the Virtual Event.There are now 7 of us, gathered to prepare for this, and I think that might be a good first step.A larger more collaborative effort should also occur with the medical professionals from various fields, neurology, psychiatry, and auditory function, perhaps others, as time passes.I am personally not sure how writing my State Senator is going to help because when they go looking to see what is out there, etc. there really is very little in the published world or the medical world, i.e., nice clinical data on cases, numbers, etiology, well, not even a decent definition, really.Our best shot was Dr. Brewer, prior to this time. We should appoint ONE person to contact her and discover what has happened, etc., what could be done, etc. etc.Let's work in cooperation.Dr M>> > > We have definitely grown since our last letter writing campaign and there> are many new, energized people. How many would like to email/write letters> regarding this condition and how it affects your life? We can send them to> several people again, and even to our representatives as Mr. Nagler> suggested.>

[Guest guest]

>Count me in!

Vicki

I think that given Oprah’s hatred of gum chewing, she might be open to

> helping us. We would need to have a lot of people send her their stories

> about the onset and symptoms and living with 4s. I wouldn’t bother with

> “Dr.†Phil. A member of this group—Joan—was actually on his show

> regarding her 4s and she got no help from him other than “you need to

> learn to overcome it.â€

>

>

>

> Also, we established that Couric’s daughter has 4s, so maybe we

> can send her our letters. Both these women are very compassionate and

> caring, and seem to have ties to 4s.

>

>

>

> Let’s start drafting our letters. I think I still have mine saved from

> last time. Then we’ll get addresses of who to send them to.

>

>

>

> Who’s interested???

>

>

>

> From: Soundsensitivity

> [mailto:Soundsensitivity ] On Behalf Of Heidi Salerno

> Sent: Wednesday, February 09, 2011 11:36 AM

> To: Soundsensitivity

> Subject: Re: Re: Letter writing campaign

>

>

>

>

>

> I agree. At this time writing the Feds is pointless. Not to say we

> shouldn't do it, ie each of us shoot one off just to get people informed.

> However, right now let's focus somewhere that may actually be of use to us

> AAA Sounds good as does NIH. I know many are against but talk shows are a

> good idea too ie the view oprah. We need public awareness as well as

> medical research.

>

> Sent from my iPhone

>

>

>

>

>

>

> I am thinking that we need to aim our arrows at the right target.

>

> It seems to me that we would benefit from some kind of Task Force Activity

> at the American Academy of Audiology. I suggested last year to Chris

> English, outgoing President, that we form such a task force for

> Hyperacusis. She was quite supportive.

>

> I should imagine that the AAA will be receptive to such a Force, depending

> on who drives the engine and who is on the committee.

>

> Sound sensitivity would surely fall under the major considerations in that

> area, and we could be sure of some voices there via the audiologists who

> are preparing for the Virtual Event.

>

> There are now 7 of us, gathered to prepare for this, and I think that

> might be a good first step.

>

> A larger more collaborative effort should also occur with the medical

> professionals from various fields, neurology, psychiatry, and auditory

> function, perhaps others, as time passes.

>

> I am personally not sure how writing my State Senator is going to help

> because when they go looking to see what is out there, etc. there really

> is very little in the published world or the medical world, i.e., nice

> clinical data on cases, numbers, etiology, well, not even a decent

> definition, really.

>

> Our best shot was Dr. Brewer, prior to this time. We should appoint ONE

> person to contact her and discover what has happened, etc., what could be

> done, etc. etc.

>

> Let's work in cooperation.

>

> Dr M

>

>

>>

>>

>>

>> We have definitely grown since our last letter writing campaign and

>> there

>> are many new, energized people. How many would like to email/write

>> letters

>> regarding this condition and how it affects your life? We can send them

>> to

>> several people again, and even to our representatives as Mr. Nagler

>> suggested.

>>

>

>

>

>

[Guest guest]

Okay, I’ll try contacting her this week or the beginning of next week. I’ll let you know what she says. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 8:57 PMTo: Soundsensitivity Subject: Re: Letter writing campaign Kathy I like that idea. you would be a great front runner for our group so please do call her up and see what is happening.Marsha> >> > > > > > We have definitely grown since our last letter writing campaign and there> > are many new, energized people. How many would like to email/write letters> > regarding this condition and how it affects your life? We can send them to> > several people again, and even to our representatives as Mr. Nagler> > suggested.> >>

[Guest guest]

If I may, I'd like to suggest that in your conversation with Dr. Brewer

you confine yourself to where things are now and how to improve the

situation for the 4S community in the years ahead. I would in no way

refer to the events of the past - you don't want to put Dr. Brewer on

the defensive.

smn

> > >

> > >

> > >

> > > We have definitely grown since our last letter writing campaign

and

> there

> > > are many new, energized people. How many would like to email/write

> letters

> > > regarding this condition and how it affects your life? We can send

them

> to

> > > several people again, and even to our representatives as Mr.

Nagler

> > > suggested.

> > >

> >

>

[Guest guest]

If I may, I'd like to suggest that in your conversation with Dr. Brewer

you confine yourself to where things are now and how to improve the

situation for the 4S community in the years ahead. I would in no way

refer to the events of the past - you don't want to put Dr. Brewer on

the defensive.

smn

> > >

> > >

> > >

> > > We have definitely grown since our last letter writing campaign

and

> there

> > > are many new, energized people. How many would like to email/write

> letters

> > > regarding this condition and how it affects your life? We can send

them

> to

> > > several people again, and even to our representatives as Mr.

Nagler

> > > suggested.

> > >

> >

>

[Guest guest]

If I may, I'd like to suggest that in your conversation with Dr. Brewer

you confine yourself to where things are now and how to improve the

situation for the 4S community in the years ahead. I would in no way

refer to the events of the past - you don't want to put Dr. Brewer on

the defensive.

smn

> > >

> > >

> > >

> > > We have definitely grown since our last letter writing campaign

and

> there

> > > are many new, energized people. How many would like to email/write

> letters

> > > regarding this condition and how it affects your life? We can send

them

> to

> > > several people again, and even to our representatives as Mr.

Nagler

> > > suggested.

> > >

> >

>

[Guest guest]

I'd write to Oprah about this. Now, THERE'S a megaphone.

Jay

> > >

> > >

> > >

> > > We have definitely grown since our last letter writing campaign and there

> > > are many new, energized people. How many would like to email/write letters

> > > regarding this condition and how it affects your life? We can send them to

> > > several people again, and even to our representatives as Mr. Nagler

> > > suggested.

> > >

> >

> >

> >

>

[Guest guest]

As a professional interested in, and working with people with 4S, I would be I would be happy to write to anyone. Just tell me who and where and when.Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCPTelephone 01488-685151/ 686881info@...www.lastingchanges.co.uk To: Soundsensitivity From: frescaphile@...Date: Thu, 10 Feb 2011 19:00:43 +0000Subject: Re: Letter writing campaign I'd write to Oprah about this. Now, THERE'S a megaphone.Jay> > >> > > > > > > > > We have definitely grown since our last letter writing campaign and there> > > are many new, energized people. How many would like to email/write letters> > > regarding this condition and how it affects your life? We can send them to> > > several people again, and even to our representatives as Mr. Nagler> > > suggested.> > >> > > > > >>

[Guest guest]

Yea, I won’t mention any speculation or rumors that I heard regarding why they decided not to research it before. That would seem unprofessional. I think I am going to email her and try to schedule an appointment to talk to her, either face to face or by phone. The NIH isn’t too far of a drive for me if she wants to meet in person. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Wednesday, February 09, 2011 11:13 PMTo: Soundsensitivity Subject: Re: Letter writing campaign If I may, I'd like to suggest that in your conversation with Dr. Breweryou confine yourself to where things are now and how to improve thesituation for the 4S community in the years ahead. I would in no wayrefer to the events of the past - you don't want to put Dr. Brewer onthe defensive.smn> > >> > >> > >> > > We have definitely grown since our last letter writing campaignand> there> > > are many new, energized people. How many would like to email/write> letters> > > regarding this condition and how it affects your life? We can sendthem> to> > > several people again, and even to our representatives as Mr.Nagler> > > suggested.> > >> >>