Re: Reply from Dr. Brewer from NIH

[Guest guest]

Nice. I called Her the other day and left a message.

>

> I just received this e-mail and it greatly cheered me up! I wanted to

> share it with the group:

>

> Dear Randall,

>

> Thank you for your inquiry regarding soft sound sensitivity syndrome.

> Several researchers at the NIH are very interested in soft sound

> sensitivity and we are currently considering investigation of this

> problem. As with any scientific investigation, careful and extensive

> planning must occur prior to implementation of a research study. We

> anticipate being able to provide you with more information about our

> plans in approximately six (6) months.

>

> We acknowledge your interest and will contact you when we are able to

> provide specifics about the possibility of an NIH study.

>

> Future inquiries can be directed to me at this email address:

> soundsensitivity@...

>

> Regards,

>

> Carmen C Brewer, Ph.D.

> National Institute on Deafness and other Communication Disorders

> National Institutes of Health

>

[Guest guest]

Hey all,

I received the same email from Dr. Brewer... that's good news.

I have not heard back in relation to my application to the Undiagnosed Diseases

Unit.

Ingrid.

>

> I just received this e-mail and it greatly cheered me up! I wanted to

> share it with the group:

>

> Dear Randall,

>

> Thank you for your inquiry regarding soft sound sensitivity syndrome.

> Several researchers at the NIH are very interested in soft sound

> sensitivity and we are currently considering investigation of this

> problem. As with any scientific investigation, careful and extensive

> planning must occur prior to implementation of a research study. We

> anticipate being able to provide you with more information about our

> plans in approximately six (6) months.

>

> We acknowledge your interest and will contact you when we are able to

> provide specifics about the possibility of an NIH study.

>

> Future inquiries can be directed to me at this email address:

> soundsensitivity@...

>

> Regards,

>

> Carmen C Brewer, Ph.D.

> National Institute on Deafness and other Communication Disorders

> National Institutes of Health

>

[Guest guest]

.... and I think it is VERY ENCOURAGING that the NIH have set up an email address

which is:

soundsensitivity@... I wonder if we should invite them to join this

group?

> >

> > I just received this e-mail and it greatly cheered me up! I wanted to

> > share it with the group:

> >

> > Dear Randall,

> >

> > Thank you for your inquiry regarding soft sound sensitivity syndrome.

> > Several researchers at the NIH are very interested in soft sound

> > sensitivity and we are currently considering investigation of this

> > problem. As with any scientific investigation, careful and extensive

> > planning must occur prior to implementation of a research study. We

> > anticipate being able to provide you with more information about our

> > plans in approximately six (6) months.

> >

> > We acknowledge your interest and will contact you when we are able to

> > provide specifics about the possibility of an NIH study.

> >

> > Future inquiries can be directed to me at this email address:

> > soundsensitivity@

> >

> > Regards,

> >

> > Carmen C Brewer, Ph.D.

> > National Institute on Deafness and other Communication Disorders

> > National Institutes of Health

> >

>

[Guest guest]

*jumps up and down* Randall that's awesome!!! How exciting that

this may actually happen! I'm sorry about you losing your health

insurance but please don't get discouraged by it. Just remember what

you've learned in therapy and keep applying it to your life. I

really hope things go well with getting the lawyer and that you will

get the disability you deserve! Best wishes...

Darlene

>

> I just received this e-mail and it greatly cheered me up! I wanted

to

> share it with the group:

>

> Dear Randall,

>

> Thank you for your inquiry regarding soft sound sensitivity

syndrome.

> Several researchers at the NIH are very interested in soft sound

> sensitivity and we are currently considering investigation of this

> problem. As with any scientific investigation, careful and

extensive

> planning must occur prior to implementation of a research study. We

> anticipate being able to provide you with more information about

our

> plans in approximately six (6) months.

>

> We acknowledge your interest and will contact you when we are able

to

> provide specifics about the possibility of an NIH study.

>

> Future inquiries can be directed to me at this email address:

> soundsensitivity@...

>

> Regards,

>

> Carmen C Brewer, Ph.D.

> National Institute on Deafness and other Communication Disorders

> National Institutes of Health

>

[Guest guest]

Does anyone else think it would be a good idea to let the people in the

Hyperacusis

Network know that Dr. Carmen Brewer is considering setting up a study. I'm sure

some

more interest in this study wouldn't hurt?

Should we let the SPD, OCD and any other groups know about this as well?

I don't spend time in any other groups, does anyone else have ways of spreading

the

word?

Ingrid.

> > >

> > > I just received this e-mail and it greatly cheered me up! I wanted to

> > > share it with the group:

> > >

> > > Dear Randall,

> > >

> > > Thank you for your inquiry regarding soft sound sensitivity syndrome.

> > > Several researchers at the NIH are very interested in soft sound

> > > sensitivity and we are currently considering investigation of this

> > > problem. As with any scientific investigation, careful and extensive

> > > planning must occur prior to implementation of a research study. We

> > > anticipate being able to provide you with more information about our

> > > plans in approximately six (6) months.

> > >

> > > We acknowledge your interest and will contact you when we are able to

> > > provide specifics about the possibility of an NIH study.

> > >

> > > Future inquiries can be directed to me at this email address:

> > > soundsensitivity@

> > >

> > > Regards,

> > >

> > > Carmen C Brewer, Ph.D.

> > > National Institute on Deafness and other Communication Disorders

> > > National Institutes of Health

> > >

> >

>

[Guest guest]

Hi

I to have received an email back from Dr Brewer. Which is great news. Fingers crossed.

Thanks

christine

To: Soundsensitivity Sent: Thursday, November 27, 2008 2:22:03 AMSubject: Re: Reply from Dr. Brewer from NIH

.... and I think it is VERY ENCOURAGING that the NIH have set up an email address which is:soundsensitivity@ nidcd.nih. gov I wonder if we should invite them to join this group?> >> > I just received this e-mail and it greatly cheered me up! I wanted to > > share it with the group:> > > > Dear Randall,> > > > Thank you for your inquiry regarding soft sound sensitivity syndrome. > > Several researchers at the NIH are very interested in soft sound > > sensitivity and we are currently considering investigation of this > > problem. As with any scientific investigation, careful and extensive > > planning must occur prior to implementation of a research study. We > > anticipate being able to provide you with more information about our > > plans in approximately six (6) months.> > > > We acknowledge your interest and will contact you when we are able to > > provide specifics about the possibility of an NIH study.> > > >

Future inquiries can be directed to me at this email address:> > soundsensitivity@> > > > Regards,> > > > Carmen C Brewer, Ph.D.> > National Institute on Deafness and other Communication Disorders> > National Institutes of Health> >>

[Guest guest]

Ingrid... thanks for posting that e-mail. I will make a thread over

at the hyperacusis site for those who would like to send in their own

story. As far as there being similarities between 4S and other sound

sensitivity/hyperacusis I really don't know. I do know that many

people who have hyperacusis got it after exposing their ears to loud

noise whether it was quick or prolonged like an extremely loud rock

concert for example. I don't know much about hyperacusis so I don't

know if it's that way in all cases. The thing with 4S is that nobody

knows what suddenly sparks it's onset and the fact that the sounds

that bug us are all quiet sounds is what is so strange!

It's true many people get to they hyperacusis site from " google " ...

that is actually how I found it and I ended up there first myself.

It wasn't until I'd ready many many threads there that I came across

this place and very glad I did!! That's why I continue to visit and

round up more troops! Every person has something to contribute in

one way or another and in the end we will win this war!!

>

> Hi Darlene, and everyone... Hi.

>

> It seems to me that Dr. Brewer is interested in studying sound

sensitivity in general, not

> just 4S. So sufferers of different types of hyperacusis would have

an interest in this study,

> and potentially help boost our chances of this research actually

going ahead.

>

> Dr. says that the sudden onset of 4S and the way 4S impact

on lives can be quite

> different from other types of hyperacusis/sound sensitivity, and we

need a separate

> support group because of the different challenges we face. But do

we KNOW if there are

> similarities in the underlying cause or 4S and other sound

sensitivities/hyperacusis? I get

> a bit confused when there are so many theories flying around, and

find it hard to keep

> hold of the facts.

>

>

> Darlene here is the email address you were after...thanks for

getting onto this.

> soundsensitivity AT nidcd.nih.gov.

>

> It's great that you tell people on the Hyperacausis site about this

site - you did that for

> me and I will always be grateful to you for that. The Hyperacusis

site has a higher Google

> ranking than this site, so unless we create a more search engine

optimized site, people

> looking for this group, are likely to go to the Hyperacusis site

first.

>

> Ingrid.

>