SF0034 — E-Mails to the White House?

[Dubbyaman]

To end suffering we should.... make more people suffer...?!

Ok let me ask you this. Did you or anyone here for that matter give a shit about the t community before you got it? See my point?

 

[valeri]

Ok let me ask you this. Did you or anyone here for that matter give a shit about the t community before you got it? See my point?

What do you suggest?
I had thoughts of chaining myself in city cbd and threat to set myself on fire.
But as others said, as an individual, I would probably be taken and put away, God knows where hehehe....

 

[Dubbyaman]

@valeri I really have no idea what to do. I'm just sick and tired of people not caring about our suffering. You try to do things the nice way. Go to doctors, write to congress etc etc and all ya get is the door shut in your face.

 

[valeri]

@valeri I really have no idea what to do. I'm just sick and tired of people not caring about our suffering. You try to do things the nice way. Go to doctors, write to congress etc etc and all ya get is the door shut in your face.

Tinnitus is just not sexy enough!
Nobody gives a f..k about it!

 

[John G]

A little off topic in regards to the White House. Any ideas on how to bring awareness to this particular forum? There are probably a lot of people with and without tinnitus out there that do not know that this forum exists.

 

[Bertman]

Suffice to say that I do not think a fast track of SF0034 is likely: first of all it is not even certain if SF0034 will be indicated for tinnitus (but see comments further down in relation to the slide).

attheedgeofscience
13/DEC/2015.

I agree that the drug likely won't be trialled for tinnitus, but I'm at least hoping it makes it to market as an epilepsy drug within a decent timeframe (So hopefully they are able to stick to their intended timeline). If people can get prescriptions for Retigabine, then surely even more people will be able to get their hands on SF for treatment, as this at least has some preclinical research showing it may help with tinnitus, and is expected to have less side effects. Of course this is all if it shows efficacy in trials..

 

[Kotve]

Small question. Don't you need to be a US citizen to write to White House? Why would they care if I wrote from Belgium for example?

 

[valeri]

Small question. Don't you need to be a US citizen to write to White House? Why would they care if I wrote from Belgium for example?

That's why we need to do it together and not individually!

 

[Kotve]

That's why we need to do it together and not individually!

I understand the fact of doing it as a group. However you and many others are still not US citizens and if he needs to take the letter into account he might not take it because of the people.

But from nothing comes nothing, so giving it a (or many) try costs us nothing. If I had to write an letter I would let an US citizen write it (obviously) and I would then make a list with all the people that are represented in this forum. They should then put the Name, Age, Country and signature to make aware that tinnitus is a handicap that affects millions of people around the world, from different ages and backgrounds. And then you send you letter / e-mail which is going to be long so an e-mail would be more appropriate.
If that does not help, I would do the same but then I would take only US citizens.

I mean as a group we can try the world health organisation and many other organisations to make them aware that at some point tinnitus can be a real handicap.

I mean just some ideas. The only problem is he reads only 10 daily so it is like winning a lottery. (Tho we can multiply the chance by having many US citizens writing the same letter/e-mail with the same list)

 

[valeri]

@Kotve

"I mean just some ideas. The only problem is he reads only 10 daily so it is like winning a lottery. "

Who's he?

 

[Kotve]

Well President of the USA is a he, no?

 

[Silvio Sabo]

Ok let me ask you this. Did you or anyone here for that matter give a shit about the t community before you got it? See my point?

Well no, not really. And I'm not arguing about that. I'm just questioning the method of getting attention.

But then again we have to raise attention and make those who have tinnitus "give a shit" a first. We are more 7000 here on this forum and hundreds of millions world wide. There are surly researchers and billionaires that have tinnitus and yet we can't even get them to "give a shit". How do you plan we make others that don't have tinnitus do that!? Without killing them, of course...

 

[attheedgeofscience]

Hi everybody,

I just talked to the Prof. Thanos Tzounopoulos. He's the one who's trying to run a clinical trial for the SF0034. He told me he's only waiting for the government to start a trial. I sent thousands of emails to the White House.

If everybody on this forum did the same thing, maybe they would do something about it.

There is nothing to lose.

Please let's get together and do something about this. Thank you.

Hi Penate... since you are the original owner of this thread, I will provide you and the rest of the tinnitus community the following "deal" in order to help spread awareness of SF0034:

• @Markku has set up a donation page (which is not specifically aimed at advocacy for SF0034) but more general advocacy awareness. If members of TT are willing to donate to this page, I will write up a high quality campaign message pertaining to SF0034 once the donations reach USD 300,- (the donations will go towards boosted newsfeed posts on Facebook).
• If donations do not reach the USD 300,- mark within a reasonable timeline - say four weeks - I may choose not to write up a campaign message (at my discretion). The money is not lost, but, will go towards other awareness projects.

In addition, I ask members and visitors of TinnitusTalk to ensure that the following Facebook post reaches 50 or more ratings in total (i.e. ratings/shares combined):



If those two criteria are met (i.e. donations worth USD 300,- and 50 ratings for the post, above), then I will do my part as a tinnitus advocate - which includes liaising with @Markku to ensure that we deliver a high quality campaign message. Typically, the posts TT shares on its newsfeed enjoy ratings which are some 30 to 100 points greater than what a FB-page with a similar sized fanbase would get (on average). See the TT-newsfeed for an objective assessment on this (i.e. compare with other similar FB-pages such the ATA or BTA).

attheedgeofscience
14/DEC/2015

UPDATE/Tinnitus Talk/December 20, 2015: Both targets have been reached. Thank you all!

 

[Dubbyaman]

@Silvio Sabo I have no idea bro. Most of my angry rants on here are fueled by frustration. I don't mean to come off like a dick. I'm just angry that there are no answers. I think a very good way to raise awareness is that some filmmaker somewhere needs to make a movie about T. Not a documentary but a fictional story about someone who is going about life just fine. Then they go to a loud event or whatever and develop T. Show how their world gets turned upside down when no Doctor can help, family doesnt understand etc. Put the movie in theaters too.

 

[Nucleo]

But then again we have to raise attention and make those who have tinnitus "give a shit" a first. We are more 7000 here on this forum and hundreds of millions world wide. There are surly researchers and billionaires that have tinnitus and yet we can't even get them to "give a shit". How do you plan we make others that don't have tinnitus do that!? Without killing them, of course...

Well the overwhelming majority of people with tinnitus do not, in fact, give a shit.

 

[derpytia]

Well the overwhelming majority of people with tinnitus do not, in fact, give a shit.

I think its more that tinnitus sufferers on here have 'lost all hope' rather than 'not giving a shit'. It's hard for people to repeatedly have their hopes raised only to have them dashed over and over again. Some people can handle that. Some, like myself, cannot. (Though I will rate/share that post up above though I cannot donate as I am flat out broke).

 

[Cheza]

Ok let me ask you this. Did you or anyone here for that matter give a shit about the t community before you got it?

I did. A friend of mine developed tinnitus several years ago and I spent quite a bit of time researching to see if there was anything that could be done to help him. I have always been sympathetic to people with tinnitus, because I always thought it would be one of the worst things that can happen, to be robbed of silence and have that silence replaced by constant noise. Not just noise, but never-ending physical sensations that accompany the noise. My freakin' head hardly ever feels clear.

I don't think any politicians care, though. I really don't. They're too busy playing games.

Well the overwhelming majority of people with T do not, in fact, give a shit.

The overwhelming majority of people with tinnitus do not have severe intrusive tinnitus. They sure would give a sh*t in a hurry if they had to live with what many of us on this forum have to live with every day.

 

[Juan Carlos]

Cool. Made my donation and tried convincing some friends to do it too...

 

[newarrior]

I just LIKED on FB... Meanwhile I search for trials on clinicaltrials.gov...

 

[Tinnitus Talk]

December 16, 2015 — Update on the Campaign Initiated by @attheedgeofscience

$300 is the target @attheedgeofscience has set.

UPDATE/December 20, 2015: We have reached the target!

The funds raised will be used for promoting @attheedgeofscience's article.

Another target was 50 ratings for the below SF0034 Facebook update. We now have 54 ratings.

This means both targets have been reached. Thank you all!

 

[John G]

I liked on FB!

 

[generalfuzz]

Donated. Many thanks to @attheedgeofscience.

 

[Martin69]

Made my donation.
Thanks for your efforts.

 

[Nucleo]

The overwhelming majority of people with tinnitus do not have severe intrusive tinnitus. They sure would give a sh*t in a hurry if they had to live with what many of us on this forum have to live with every day.

Yeah they probably would. The average tinnitus patient probably comes here, never bothers to create an account and moves on.

It is what it is as they say.

I think its more that T sufferers on here have 'lost all hope' rather than 'not giving a shit'. It's hard for people to repeatedly have their hopes raised only to have them dashed over and over again. Some people can handle that. Some, like myself, cannot. (Though I will rate/share that post up above though I cannot donate as I am flat out broke).

Sure there may be some who feel that way. I was more thinking about how tinnitus is not a really big issue for the majority of people and would rather not get involved with anything relating to that subject.

 

[PatrickG]

Donation made.

 

[RaZaH]

I donated 50 spacebucks to the campaign on December 15th,so its already in the tally!
Lets make this happen

Not just noise, but never-ending physical sensations that accompany the noise. My freakin' head hardly ever feels clear.

Indeed, that is my life... in fact the actual sound I could live with, the sensation... no thanks.

 

[Sailboardman]

Donated.

Hope the correspondence does us some good. Thanks ATEOS and the TT team.

 

[Greg Clarke]

Donated, a little surprised it's taking this long to gather the $300.

 

[Tamika]

Donated. Should be enough to hit the spot. Keep up the good work. @attheedgeofscience

 

[Tinnitus Talk]

We can confirm that we have now reached both goals @attheedgeofscience set!

@attheedgeofscience is working as we speak on his campaign message.

Thank you everyone!

If all of you want to do something else in the interim, please go and like our Facebook page!