Randi Zuckerberg Knows a Lot About Hearing Loss

[Foncky]

Hi,

Randi Zuckerberg (Mark's sister) found out one day that her little boy Simi had hearing loss. He was 20 months old when he was diagnosed:
http://www.today.com/parents/facebook-helped-randi-zuckerberg-diagnose-son-s-hearing-loss-t104152

Isn't it an opportunity for us? She knows about hearing loss and the devastating effects it can have, maybe she could help us to raise awareness (and money).

 

[Champ]

Hi,

Randi Zuckerberg (Mark's sister) found out one day that her little boy Simi had hearing loss. He was 20 months old when he was diagnosed:
http://www.today.com/parents/facebook-helped-randi-zuckerberg-diagnose-son-s-hearing-loss-t104152

Isn't it an opportunity for us? She knows about hearing loss and the devastating effects it can have, maybe she could help us to raise awareness (and money).

Somehow he got help according to that story to repair his hearing loss.

So my next question is, how the hell do we get this?

 

[Foncky]

I think he had an infection in the outer or middle ear. So something surgery could fix. Not the same story with inner ear damage unfortunately.

But we can guess he got the best treatment/surgeon available on earth...

 

[Foncky]

So the world richest man's sister is personally concerned by hearing loss and I'm the only one here who wants to contact her to talk about hearing disorders and how they affect the daily life of millions.

Mark Zuckerberg and his family are not only rich, they really care about diseases that have no treatments yet.

All right, I'll do it. Will keep you posted

 

[lolkas]

So the world richest man's sister is personally concerned by hearing loss and I'm the only one here who wants to contact her to talk about hearing disorders and how they affect the daily life of millions.

Mark Zuckerberg and his family are not only rich, they really care about diseases that have no treatments yet.

All right, I'll do it. Will keep you posted

Hey Foncky,

let me know how can i help. My company did some IT move support here in NYC for Facebook and i might be able to get in contact with someone here in NYC from FB but not sure that can what not get to Mark or Randi

 

[Foncky]

Hi lolkas,

All right, that could be useful ! I don't know how to proceed yet. I'm currently trying to write a good letter for her, I'll have to decide how to send it in a smart way. She must get tons of emails every day.

 

[lolkas]

Not sure either. We have to ask if she can help raise awarness and assist with pushing this issue to masses. Her kid had hearing issues and she most likely to react to our problem. It would be cool if they would post audio stream (continious) with some high pitched noise and say that this is what tinnitus sufferer experiences and its constant without relief. And in order to give us our lives back - cure must be found to at least supress this symptop to a point where it is barely noticable at all, if not eleminated completley.

Again, we need to state that we do understand that Tinnitus is a symptom, not a desease, but it is as bad as terminal condition, it just never ends. Point out that if we could supress that, then doors to cure for NIHL (most common cause) could be found and other causes as well.

 

[Vinnitus]

Good idea, @Foncky, perhaps something good will come from it. We need people in influential positions to put this issue higher on the agenda.

Did you already send your letter in the meantime? If I can be of any assistance, please let me know.

 

[Foncky]

I did not send it yet.

Just tell me what you think is very important to tell her.

Not sure either. We have to ask if she can help raise awarness and assist with pushing this issue to masses. Her kid had hearing issues and she most likely to react to our problem. It would be cool if they would post audio stream (continious) with some high pitched noise and say that this is what tinnitus sufferer experiences and its constant without relief. And in order to give us our lives back - cure must be found to at least supress this symptop to a point where it is barely noticable at all, if not eleminated completley.

Again, we need to state that we do understand that Tinnitus is a symptom, not a desease, but it is as bad as terminal condition, it just never ends. Point out that if we could supress that, then doors to cure for NIHL (most common cause) could be found and other causes as well.

Yep, thank you, I'll include all that.

 

[attheedgeofscience]

All right, I'll do it. Will keep you posted

Has your e-mail made its way through the server of your local Internet provider, or, did it by chance take a wrong turn through one of the connections on its way to the US?

 

[Foncky]

We can always count on you to remind us how fantastic you are. Don't worry, you are still the only one who does something for the T cause

 

[attheedgeofscience]

We can always count on you to remind us how fantastic you are. Don't worry, you are still the only one who does something for the T cause

I never said anything about myself. I simply wondered - if - yet another initiative fell to the ground. Or to be accurate: never took off the ground in the first place... And to be fair to you, there was quite a bit of "Internet activity" during the past few months - you know, the US election and some Russian hacking that supposedly never happened - not to mention some "fake news" concerns of which Facebook was, ahem, a significant "player". In such situations, one can never be certain if your e-mail had gotten lost due to some "collateral damage" from those activities.

Having said all that, I would always have thought that there would be a correlation between suffering and fighting for a cause. But for the tinnitus population that correlation seems to be inverted. In retrospect, since developing a worsening of tinnitus back in 2013, I have learnt as much about membrane potentials and stem cells as I have about human psychology. All of it fascinating stuff, but, for very different reasons.

I also took note of this little gem of yours from a while back...

I don't check in with TinnitusTalk that much anymore, but, from what I can gather, the status quo of inactivity seems to be well preserved.

 

[Foncky]

I won't argue with you on that : I failed on this one, for now at least. Just like you and the people who never suggested anything. I was going for a sort of "collective" letter". Only 3 people replied to this thread.

So instead of looking for "little gems" of ours, help me to write this thing down if you want.

You may have learned a lot about human psychology, but you have no idea of what some of us are going through right now. Otherwise you wouldn't be playing this game.

 

[Rubenslash]

Could you send me what you currently have written down?

 

[attheedgeofscience]

I won't argue with you on that : I failed on this one, for now at least. Just like you and the people who never suggested anything. I was going for a sort of "collective" letter". Only 3 people replied to this thread.

In my not-so-insignificant experience with advocacy, your biggest challenge is going to be getting hold of her contact details. Over the past two years (and a bit), I have had to track down the e-mail addresses of many people - a sometimes time-consuming task. I can therefore say - with near certainty - that tracking down the e-mail of a high profile person like Randi Zuckerberg is a mission with an unlikely outcome.

Put in simple terms: why bother to write a letter if you know you will never be able to send it? And secondly, why do you need someone to help you write a letter? Why is it that more or less every thread on TinnitusTalk starts with "let's do something"? If you want to do something, just do it. Don't look for someone to help you with your goals; achieve them by yourself.

 

[Foncky]

I know Ateos, I know. I'm still figuring out how to find a balance between my short-term fight and the long-term battle.