My Writing Campaign for More Funding Towards Tinnitus Research

[ThomasF]

A few hours ago I wrote the President of the United States, pleading for more funds going toward researching a treatment or cure for tinnitus. I intend to continue to do so on a regular basis using their provided email function. I am unsure what schedule I will be doing this at; however, I don't see why I couldn't do it on a daily basis. I am posting here because organizing something like this with others has a stronger chance to gain traction and see results. I welcome anyone posting their thoughts on this subject and am hopeful there are others that will follow suit.

Some of this is influenced by the recent failing of OTO-313 and the likely dooming of Otonomy as a result. Given their promise as a company as well as the potential for other firms to take a crack at fixing tinnitus, I hope to maybe shift this current from companies being sunken to being able to try more experiments as well as more groups taking interest and making their own attempts.

Thank you for reading. I will update all of you at the time of my next email to the President.

 

[ThomasF]

I received a response which talks about ARPA-H, a part of the National Institutes of Health, that is dedicated toward expediting research for a number of conditions. I wrote ARPA-H specifically asking them to look into tinnitus and hearing loss research such as FX-322, OTO-313/OTO-413, as well as NHPN-1010. I mentioned my own experiences with tinnitus as well as its relationship with the aftermath of cancer treatments. I've linked the response. I have edited out my personal information from it.

 

[ThomasF]

I've taken the initiative to write both my State Senators as well as my Representative asking for more consideration toward funding research into curing tinnitus.

 

[ThomasF]

Unfortunately, while my writing to the President did return something of a considered and accurate response, the responses I've received from my state's senators and representative have been solely campaigning ads. A sad, if not unexpected result.

 

[Watasha]

@ThomasF, I'd like to commend you for taking the time to write your representatives in Congress and the White House. Sadly, this thread is a microcosm of the tinnitus community at large where many can expend great efforts writing on this website but won't do the same as you and lobby their representatives, leaving the advocacy to only a small group of the self selected.

Do you have a template that you used in writing your letters that you would be willing to share?

 

[ThomasF]

@ThomasF, I'd like to commend you for taking the time to write your representatives in Congress and the White House. Sadly, this thread is a microcosm of the tinnitus community at large where many can expend great efforts writing on this website but won't do the same as you and lobby their representatives, leaving the advocacy to only a small group of the self selected.

Do you have a template that you used in writing your letters that you would be willing to share?

I used no template, so unfortunately I cannot share one. What I wrote was not based on any form that I can think of.

I went onto the whitehouse.gov website and sent an email to the President and did so similarly to my Representative and Senators.

Thank you for inquiring.

 

[Watasha]

I used no template, so unfortunately I cannot share one. What I wrote was not based on any form that I can think of.

I went onto the whitehouse.gov website and sent an email to the President and did so similarly to my Representative and Senators.

Thank you for inquiring.

I didn't mean a formal template. I guess I mean did you include facts/figures related to tinnitus that could be shared here so others can leverage it without having to dig up the data and write the prose themselves.

 

[ThomasF]

I didn't mean a formal template. I guess I mean did you include facts/figures related to tinnitus that could be shared here so others can leverage it without having to dig up the data and write the prose themselves.

I mentioned there being 50 million Americans who suffer from tinnitus and that there were some firms looking into treatments. I mentioned Frequency Therapeutics and Otonomy I believe. Unfortunately, with how the email utility works on the website I can't pull it up and simply post an edited version of it here for you to look at. I wish I could be more helpful in this and am sorry not to have been. I'll put some figures together and make a post with said figures and some facts relating to tinnitus and its research to aid those who wish to participate.

 

[Greg Sacramento]

Keep writing, but also include the Department of Health Education and Welfare and Lobbyists. Lobbyists make elected officals act. I once gave a link to a US Federal Government medical request research form and I never received feedback from members.

We have discussed this subject before within many threads. Key search words would be Senator and Congress. I mentioned how I either wrote or called my local officials.

This is one response - a telephone conversation with my congressperson, posted a while back on Tinnitus Talk. "He added that some are not deliberated by it and others have it improve. He referred to NORD - National Organization of Rare Diseases. I checked yesterday and he's correct. I know that NORD is one of the sources that Social Security Disability Uses."

Before saying this, it was mentioned there have been thousands of research studies with more to come and many of them funded by State Universities. He knew there have been thousands of studies for physical tinnitus causes - neck, jaw and facial and other causes including hearing loss induced tinnitus. He mentioned that more public companies with shareholder funds need to conduct clinical trials with data overseers for hearing loss induced tinnitus.

He mentioned to write to drug companies. And to write to lobbyists because elected officials listen to lobbyists as they receive large donations from them. He mentioned that only one in three thousand medical research requests that he receives is for tinnitus. I mentioned Tinnitus Talk and he said he has been here. He said posters often talk about habitual adjusting and some talk about coping methods that help. I wondered if he had a family member with tinnitus. He is a strong military veteran supporter.

By email, I never heard back from California's US Senator representatives or from their staff.

 

[ZFire]

Keep writing, but also include the Department of Health Education and Welfare and Lobbyists. Lobbyists make elected officals act. I once gave a link to a US Federal Government medical request research form and I never received feedback from members.

He mentioned to write to drug companies. And to write to lobbyists because elected officials listen to lobbyists as they receive large donations from them. He mentioned that only one in three thousand medical research requests that he receives is for tinnitus. I mentioned Tinnitus Talk and he said he has been here. He said posters often talk about habitual adjusting and some talk about coping methods that help. I wondered if he had a family member with tinnitus. He is a strong military veteran supporter.

I agree with this Greg, lobbyists and interest groups could have the bigger impact here. Lobbying expenditures have steadily increased over the past 6 years, that's a pretty clear indicator (to me at least) that their ability to influence policy is growing ever more stronger. We'll need to be represented by US Chambers of Commerce though, that business organization is one of the top lobbying spenders at the moment. I'm sure there are lots of drug companies represented by them too.

 

[Nick47]

I'm in the UK. I wrote to my MP who did reply. He highlighted a speech from February this year made in the House of Parliament. It stated that 1.5 million pounds had been given to research from 2017-2022.

I thought is that it? £300k a year for a symptom with no treatment.

The MP said they would raise the issue when appropriate.