What you should know
We cover numerous stories of those suffering from hyperacusis. The lack of knowledge about this disorder is astonishing and even more so is the lack of funding.
"While over 40% of people with tinnitus have hyperacusis, tinnitus funding greatly exceeds hyperacusis by more than a hundred fold." - Bryan Pollard, President of Hyperacusis Research .
Source (US National Institute of Health RePort).
Attached the data I collected that is the best way to show NIH sponsored projects. It is using RePORTer from NIH.
I pulled 20 years of funded projects and found the following data using keyword searches on the abstracts*.
There were 7 distinct HYPERACUSIS funded projects.
There were 165 distinct TINNITUS funded projects.
There were 1444 distinct HEARING LOSS funded projects.
So on a percentage basis.10% of auditory disorder projects funded were Tinnitus related while
only 0.4% of auditory disorder projects funded were Hyperacusis related.
Since 40% of Tinnitus patients have hyperacusis and it is frequently a much more severe impact than Tinnitus the funding percentages are not well balanced.
Bryan Pollard, President of Hyperacusis Research, has been very helpful in providing me with informative information. He recently attended the 2014 MidWest ARO Conference where he had a chance to sit down and speak to 10 ear researchers who have focused on hyperacusis.
Become a Hyperacusis Advocate
Whether you have hyperacusis, a family member or friend it is YOU the people who can make the most sufficient difference in getting public funding for Hyperacusis Research. Hyperacusis can affect anyone at any time.
Hyperacusis is a disorder that affects how one hears everyday sounds better known as a 'sound sensitivity' that causes discomfort, pressure in the ears, severe pain, hearing loss, dizziness etc. These people have difficulty working out in a world filled with sounds. Whether its a doors closing, paper shuffling, car passing by or phone ringing one never knows what sound is going to bring them to their knees.
One of the most helpful things you can do is write letters to your Senators and Representatives letting them know the time to increase public funding for hyperacusis research is now! If you are unsure who your Senators and Representatives are, you can visit http://www.usa.gov/Contact/Elected.shtml and easily contact your state and federal representatives.
Sample Letter to Representative and Senators
This letter will make it easy for you to communicate with these influential policy makers. Make sure they know that you live in their state or district by including your address in your signature.
[Your City, State, Zip]
The Honorable [Name of Rep or Senator]
[House of Representatives] or [United States Senate]
[Room Number and Office Building of Rep or Senator]
Washington, D.C. 20515 (for House) or 20510 (for Senator)
Dear Representative _______________________ / Senator ________________________
My name is ______________________ and I am a supporter / sufferer of Hyperacusis. Hyperacusis is a disorder, which affects how people hear everyday sounds. They were not always like this / I was not always like this; They / I use to live a normal life just as everyone else.
[Briefly, state in your own words how you got hyperacusis or of those you know with hyperacusis, when diagnosed and how it has affected yours / their life.]
I urge you to seek funding for hyperacusis research. [State your reason why]
[Insert your name]