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Jennifer

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Posts: 319
Reply with quote  #1 
Okay, I'm going to start the thread that I just suggested in the following message I posted in the 5.6 million dollar research grant thread.

So, who wants to be a member of the board of directors or just a member of an initial organzing group for a nonprofit hyperacusis organization whose mission will be to find a cure for hyperacusis? As I said in the message below, I'm too much of a physical wreck to be part of this, I'm afraid (but before I got into such a bad state, I spent a lot time volunteering with the person mentioned below.) But I do hope that others will get involved!

Jennifer

"I am very disabled by a number of physical problems I have, including fibromyalgia and a rare spinal disorder (Tarlov cysts) so I can't  be the one to start a grassroots campaign, but I will share my experience in regard to this:

A person with Tarlov cysts put up a website about Tarlov cysts and then started a message board. He then recruited volunteers from the message board to do volunteer work to help him out. He then asked some of the volunteers to join a board of directors of a foundation that would fund Tarlov cyst research. He found some sample by-laws on the Internet and customized them for the "Tarlov Cyst Disease Foundation." One of the other members of the board brought the by-laws to an attorney and the foundation was incorporated as a 501(c)3 nonprofit organization.

The foundation then focused on raising money - both from individuals and from other foundations. After raising $35,000, they hooked up with NORD (the North American Organization for Rare Disorders) and they officially offered a research grant through NORD. The grant was awarded to a researcher and her research project is now underway.

The foundation has continued to raise money and they recently received a grant that will fund a project to educate medical professionals about Tarlov cysts.

That's the long and short of it. It's great that we already have a website and a message board, thanks to Dan; however, other people need to get involved and volunteer their time as well if anything else is to happen. My suggestion would be to start a thread about forming a 501(c)3 nonprofit organization that will fund hyperacusis research and educate the medical community about hyperacusis issues.

Jennifer"

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Johnloudb

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Posts: 1,951
Reply with quote  #2 

Hey, Jennifer,

Great idea. I also planned to start a similar grass roots hyperacusis thread but I had no clue where to begin. I'm sure glad you do! Like you I'm too limited health wise to do much. I have global brain sensitivity in addition to hyperacusis and I am limited with how much typing and  reading I can do among other things. 

Quote:
 My suggestion would be to start a thread about forming a 501(c)3 nonprofit organization that will fund hyperacusis research and educate the medical community about hyperacusis issues.

That sounds great and is exactly what needs to be done in my opinion. Got to educate the ENTs. It is terrible to see people who don't find help until their condition gets much worse. If ENTs had just a basic understanding of hyperacusis and pointed their patients in the right direction, wouldn't that be wonderful.

I'll join! I sure hope there is interest out there. 

Who's going to run this organization? That's the question I guess. 

Once we get organized we might see if we can recruit Dr. Nagler, Rob, Dan M., and others to hit the talk show circuits. I'd bet Dr. Phil would love to wrap his hands around hyperacusis, phonophobia, and misophonia. Maybe he'd do a show on senstivities and phobias - if enough people wrote him he might. 

Well, people, let's make some noise (pun intended)!

John

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hyperacusisresearch

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Posts: 9
Reply with quote  #3 

I've begun the process for starting a 501(3)c hyperacusis research organization and am looking for founding partners.  Anyone interested please go to the site http://hyperacusisresearch.org/ and click on the Contact Us form.  Looking forward to helping to find a cure. 

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Jennifer

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Posts: 319
Reply with quote  #4 
It's really great that you are doing this. I hope that some of the able-bodied members of the forum will help you out.

BTW, I like your website. It's very interesting and very well written.

Jennifer

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DrJ

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Posts: 222
Reply with quote  #5 
I registered at  your site.

I believe back in 1999, I formed a non profit 501 C 3 called American Hyperacusis Association with a couple people who had H.  I wonder if that is still available for use.

MJ

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Marsha Johnson
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