MemberQuite frankly @Danny Boy , that doesn't surprise me in the slightest bit and is more than likely one of the reasons why Team Trobolt flagged the Tinnitus Association way completely!
Do You Consider Your Tinnitus a Disability?
- Thread starter martin12
- Start date
Quite frankly @Danny Boy , that doesn't surprise me in the slightest bit and is more than likely one of the reasons why Team Trobolt flagged the Tinnitus Association way completely!
Hey!
What cruel country cuts your fingers just for a spray painting? I love graffiti!! They embellish those grey, sad, dirty walls. Governments all over the world should begin to consider it as a true art, and organize it well, and pay people able to draw them!I see your point and it makes sense to me. But the prison is also a punishment without being a disability. This is what I meant.
Hey!
I see your point and it makes sense to me. But the prison is also a punishment without being a disability. This is what I meant.
I'm guessing the middle east?
I agree totally! I just wish they would fund a potassium modulator, but that's very unlikely.
Well, the BTA are not funding any research related cures, instead they are funding masking...Says it all really. They don't want to cure it they'd be redundant otherwise.
I'd die before being able to report it, for sure. We're a bit off topic here, my fault, we better stop it
I'd die before being able to report it, for sure. We're a bit off topic here, my fault, we better stop it
It's cool, let's back to it!
MemberDanny Boy, I just reviewed a list of the BTA's past and current research projects. And as far as I can tell, they are not currently funding any masking studies nor have they ever in the past funded any masking studies. As with ATA, if an investigator were to submit a grant proposal to the BTA to study potassium modulators in the treatment of tinnitus, I am quite sure that the BTA would give serious consideration to funding it. But if no such grant proposals are submitted to them, you really cannot lay the blame at the feet of either organization. That's the way I see it, anyway.
undecided
Member
There is a total of £75,000 available in the current round and it is anticipated that the BTA will commission 1-2 projects of high quality.
From http://www.tinnitus.org.uk/lrps3
For 75K, divided by 2 (2 studies of high quality) my expectations are rather low - considering the fact that millions upon million are required for a complete R&D study with multiple trial phases.
35K might buy be enough for buying 35 iphones and a some masking applications from the app store.
However, no one can blame the organization, its limited funding and the fact that noone guarantees that pouring money into potassium channel research is anything more than a shot in the dark.
From http://www.tinnitus.org.uk/lrps3
For 75K, divided by 2 (2 studies of high quality) my expectations are rather low - considering the fact that millions upon million are required for a complete R&D study with multiple trial phases.
35K might buy be enough for buying 35 iphones and a some masking applications from the app store.
However, no one can blame the organization, its limited funding and the fact that noone guarantees that pouring money into potassium channel research is anything more than a shot in the dark.
- Nov 6, 2014
- 520
- 41
- Tinnitus Since
- 10/2014, worsened 5/2024
- Cause of Tinnitus
- Ear infection / Long-term Noise ; Acoustic Trauma
I can assure you that we are in frequent contact with authorities at the BTA, as well as others in the funding and research community. One particular funder, the Hearing Health Foundation, is one that we have been in contact with, and has a far greater reach in grant contributions than ATA or BTA combined:
The above page is from their audited financial statements for the year ending September 30, 2014. This shows that they spent $1.3M on research grants in the past year. Their Form 990 for the year ending shows that they spent that grant money on 29 different research projects at various universities around the United States.
A sample:
So all in all -- Team Trobalt is forging connections with funders and orgs that are interested in research toward a cure. HHF in particular is putting a lot of cash into the research community and is extremely financially transparent--which is nice to see.
So as @Dr. Nagler mentioned, if you want to know what Team Trobalt is doing -- just ask!
HHF Form 990 from 2014
HHF Audited Financial Statements from 2014
- Nov 6, 2014
- 520
- 41
- Tinnitus Since
- 10/2014, worsened 5/2024
- Cause of Tinnitus
- Ear infection / Long-term Noise ; Acoustic Trauma
As for raising awareness--well, Tinnitus Talk has 6,000 members. Imagine if all 6,000 of us posted about Tinnitus on our Facebook walls, talked about Tinnitus on Twitter, ran fundraiser 5ks on behalf of Tinnitus research, or if all of us simply donated $10.00. We could fund a $60,000 project. Although I generally agree with @Dr. Nagler that focusing on one's own misery might just make one more miserable, focusing our energy on raising awareness (and, especially, fundraising!) could make us feel better AND help us make legitimate headway toward finding a cure. And if that means funding potassium modulator research, well, I'm sure some researchers would love to have $60k to help pay for equipment, staff time, etc.
Imagine $10 from each of our members! What a difference that would make!
Just a thought. Now I'll stop taking us all off the topic of this thread.
Imagine $10 from each of our members! What a difference that would make!
Just a thought. Now I'll stop taking us all off the topic of this thread.
As for raising awareness--well, Tinnitus Talk has 6,000 members. Imagine if all 6,000 of us posted about Tinnitus on our Facebook walls, talked about Tinnitus on Twitter, ran fundraiser 5ks on behalf of Tinnitus research, or if all of us simply donated $10.00. We could fund a $60,000 project. Although I generally agree with @Dr. Nagler that focusing on one's own misery might just make one more miserable, focusing our energy on raising awareness (and, especially, fundraising!) could make us feel better AND help us make legitimate headway toward finding a cure. And if that means funding potassium modulator research, well, I'm sure some researchers would love to have $60k to help pay for equipment, staff time, etc.
Imagine $10 from each of our members! What a difference that would make!
Just a thought. Now I'll stop taking us all off the topic of this thread.
We don't we do it then? I'd gladly donate £10 or more! And thanks for the information!
- Mar 11, 2015
- 122
- Tinnitus Since
- 02/2015
- Cause of Tinnitus
- high pitch hearing loss, both ears, right is worse
For me right now it is. Having this T since February, I have dealt with shock, confusion, anxiety and panic attacks, fight or flight mind set, not being able to focus, denial, depression, understanding how people could want to commit suiside , hopelessness. I cannot imagine dealing with a job. But today I am at a better place and feeling much better. Saw ENT Dr yesterday that I liked very much. I am going to have s CAT scan done soon. I am learning and understanding what is going on. But this T I am finding out is one of the most misunderstood things. People just don't get it. Wonder why it is NOT labeled on medications as a possible side effect. THAT would bring awareness to millions that drugs sometimes cause T. I did go online and look up Disability and Tinnitus. Seemed to be a long road to proving your situation. Insurance companies control so much.
Oh, them! I've been on their website they want to regenerate hair cells don't they? I do worry though, that regenerating hair cells might not cure us, but hopefully it will, as the signal will be back, thus causing....I mean the a KV3.1 modulator is meant to repolarize the neurons back their natural state. I do wonder why loads of money is being spent on loads of projects when we knew about this back in 2003, really odd eh? Anyway, cheers!
Research into potassium modulators have been competed a long time ago. Anyway, I understand they have limited funds so I guess that's why they invest heavily into coping things. I believe it'll be massive pharmaceutical companies that will cure us. For example this paper explains KV3.1 modulators. This was from 2003.
Modulation of the Kv3.1b Potassium Channel Isoform Adjusts the Fidelity of the Firing Pattern of Auditory Neurons
http://www.jneurosci.org/content/23/4/1133.full.pdf
Danny Boy, with all due respect, it was you who mentioned the need for potassium modulator research back in post #67. That's what Trobalt is - a potassium channel opener. So either you want research into potassium modulators like Trobalt ... or you don't. I'm not trying to pick an argument here - just pointing out that the challenges in tinnitus research are not quite as black and white as they might seem.
All the best.
Done a lot of thinking since yesterday, and
Done a lot of thinking since yesterday, and I would have to say "yes". There are tons of factors that comes into play in each and everyones life that determine how you react to your tinnitus, and to other health related issues you experience as a consequense.
To use myself as an example. My tinnitus has gotten slightly worse from day one. I´m a person who feels the need to know what happens at all times. I crave predictability. Some would say "control freak". And the fact that I have no chance to predict how my tinnitus will react in the future (my doctor even says that "one day you could wake up and the tinnitus would be gone!", but I don´t dare hope for that), has caused me to develop anxiety. And then depression on top of everything. Thanks to medications, my depression is now gone, and I have coping strategies to deal with the anxiety when it represent itself. My tinnitus characteristics has´t changed one bit (only gotten louder), yet my overall health concerns are better, due to depression and anxiety being less.
I have many more examples, but won´t go into them here.
All in all, yes, I think it is the person affected with tinnitus ways/possibility of coping with it that determines whether it´s a disability or not, to that person. If there´s anything I´ve learned from going back and forth to doctors, specialists, taking courses, talking to other people the last five years, it´s that everyone reacts differently to their tinnitus. There are so many things that come into play.
- Mar 11, 2015
- 122
- Tinnitus Since
- 02/2015
- Cause of Tinnitus
- high pitch hearing loss, both ears, right is worse
Did not know that. USA is my domain. Never saw it in any MEDS.But it is. At least here in Norway it is
- Mar 11, 2015
- 122
- Tinnitus Since
- 02/2015
- Cause of Tinnitus
- high pitch hearing loss, both ears, right is worse
- Mar 11, 2015
- 122
- Tinnitus Since
- 02/2015
- Cause of Tinnitus
- high pitch hearing loss, both ears, right is worse
I guess I read recently that there are over 400 MEDS that can contribute to T. Have no clue what they are off the top of my head. Point being I am 61 years old and never knew or heard about Tinnitus. There clearly is reason for that.
Log in or register to get the full forum benefits!
Similar threads
