Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Hi ,Initially we applied to the Undiagnosed Diseases Unit, which was a real palaver involving letters of referral etc etc.One member of our group was rejected, and we figure we will all be rejected for that particular study, although we don't know yet.But in the rejection letter from the Undiagnosed Diaseases Unit, they suggested we contact Dr. Carmen Brewer at the Hearing something or other department at the NIH.There is a thread in this forum with a link to her email address, it also contains some of the letters/emails that other in this group sent to her which might help you kick start your own email. Hope this helps, I think the thread is the best place to go, you'll find all you need there.Ingrid.How do we apply for the NIH study? I don't know where the application is or do we have to call them?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Hi , I just went looking for the thread that i mentioned and it seems to be missing. At this stage, I think the best thing is to try to get Dr. Carmen Brewer's email address. I can't find it here any more, or may be I'm too tired to see it. I'll did it up from somewhere if someone else doesn't get back to you sooner with it. I'm not sure if there is any point in completing a full application at this stage, as the study isn't definite, it is just a possibility and getting a full application is quite a bit of work with referal letters. The email to Dr. Brewer will ensure that you are contacted if the study does get up. Ingrid. > > How do we apply for the NIH study? I don't know where the application > is or do we have to call them?? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 As a reminder, the NIH UNDIAGNOSED/RARE DISEASES department did reject me BUT there is another NIH department that IS looking into us and even has an e-mail address confitrming this: soundsensitivity@.... To directly contact Dr. Carmen Brewer, she is at brewerc@... .. Below is her letter to me from 11/26/08…. 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 From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of lsalin Sent: Wednesday, December 17, 2008 6:02 AM To: Soundsensitivity Subject: NIH How do we apply for the NIH study? I don't know where the application is or do we have to call them?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Dr. Brewer responded to my letter I emailed her. She said that many researches are interested in researching 4S and that we should know within the next 6 months. The NIH also set up a special email for us: soundsensitivity@... I would suggest emailing the address above with your story or your concerns for help. Here is what she wrote back to me: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 ---Thanks, I did email Dr Brewer and got a reply. For some reason I thought there was already something to fill out. I recall she said she will let us know in six months if there is a study ready to enroll > Hi , > > Initially we applied to the Undiagnosed Diseases Unit, which was a > real palaver involving letters of referral etc etc. > One member of our group was rejected, and we figure we will all be > rejected for that particular study, although we don't know yet. > But in the rejection letter from the Undiagnosed Diaseases Unit, they > suggested we contact Dr. Carmen Brewer at the Hearing something or > other department at the NIH. > There is a thread in this forum with a link to her email address, it > also contains some of the letters/emails that other in this group sent > to her which might help you kick start your own email. > > Hope this helps, I think the thread is the best place to go, you'll > find all you need there. > Ingrid. > > > > > > > How do we apply for the NIH study? I don't know where the application > > is or do we have to call them?? > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 , here is the info you need; This is the letter of acknowledgement you will be sent, if you register your interest in an email. It contains the most up to date info. Dear _______, Thank you for your inquiry regarding soft sound sensitivity ... 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 at nidcd.nih.gov Regards, Carmen C Brewer, Ph.D. National Institute on Deafness and other Communication Disorders National Institutes of Health Quote Link to comment Share on other sites More sharing options...
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