I think I've told you many times...Most of the people on this site are old enough to be your parents. Some your grandparents. They are at a very different point in their life. You will face serious headwinds here if you are looking for that type of participation. Also - the only way you will get anything started would be through a non for profit charity. They have to spearhead it. The same way I got VEDA to start the petition for OTO-104. No one will or should send you any money. Not saying that to be a jerk...but its just fact. So if you are serious about this in any way shape or form... you need to get the entire thing organized through some one like the American hearing Health Org. They are good people and are looking to help. Good luck.
I do not know how anyone interpreted this as giving me money. This was never mentioned once. _____________Anywhere._________________ _____________At any time.________________ Period. Full-stop. I am asking which link I should include in a description of a video. Donations would be made directly to an organization -- there was never an alternative. The whole point in the topic was trying to decide which organization I should include a link to -- and others should link to if they did the challenge. That's it. Funds were _never_ making a pit-stop through me. I cannot wrap my head around the mistrust directed at me. It's badly misplaced. Not only had I never mentioned giving me money, but the design of the fundraiser itself precludes any type of scam: Make a video. Include a link to an organization in the description (which is what I'm asking for in this thread). Tag people to do the 'challenge'. Have them include the same link. Where is the potential for a scam. Already people are trying to sink the idea and it's absolutely bizarre and grounded in total misunderstanding. I am here. Asking for what link I ought to include. This makes zero sense. Literally the only potential for a scam would be if I owned the organization people were donating to. And I'm asking for recommendations on where to donate. Kinda would ruin any sleuth rip-off, wouldn't it? I've said it before. Wanna know my intentions? They're not hard to understand. I'm twenty-six and this sucks. I have a daughter and it would kill me to see her inherit it without better treatments available than what is available to me. And, believe it or not, I have a lot of empathy for other people suffering with this -- despite apparent attempts, here, to erode my empathy. Don't you think it kills me to feel partially disabled? I have people in my own life I feel like I'm failing. This has placed a massive strain on everything. My entire future is an uncertain mess. I've cried nearly every night since getting a dx because I don't know what to expect and do not want to fail people around me. I don't know what was said that made a few people suspect me of a sin that was never within my capability to commit. I'm really, really sick of this insanity. I'm not directing this spiel at you, Mac. You've been helpful throughout. I'm speaking generally to anyone levying bullshit allegations.
If that's your game plan...sounds good to me. Good luck making the video. Starting this stuff is not easy...I wish you luck in getting a charity to back you. I am always around if you need help. Good luck!
I'm sorry, but I have no idea where you got the notion that ALS was virtually unheard of before the ice bucket challenge. I guarantee that if you ask the average person on the street, she or he will have heard of ALS but not Meneire's Disease. The below quote is from the ALS Association website: "ALS was first found in 1869 by French neurologist Jean-Martin Charcot, but it wasn’t until 1939 that Lou Gehrig brought national and international attention to the disease. Ending the career of one of the most beloved baseball players of all time, the disease is still most closely associated with his name. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death" And that's the big difference between ALS and Meniere's. ALS causes death. As debilitating as Meniere's is, a disease that causes death is always going to get more attention and funding. I'm not trying to knock you and I admire what you're doing but I just wanted to point out that ALS is hardly unheard of and there has certainly has been considerable research done on it even before the ice bucket challenge.
Meniere's effects something like 100x - 200x the number of people. In my experience, as a person that did know about ALS before the ice-bucket challenge, whenever I mentioned it to others, no one had heard of it. I'm not saying no one, at all, knew of ALS. But I do know funding in individual research centers was doubled after the ice-bucket challenge. If you were just to take the number of Meniere's patients stacked against the number of people that knew of ALS (incidence of ALS is about 1 in 100,000), I wouldn't doubt there are more patients of Meniere's than general knowledge of ALS. Meniere's has also effected many famous individuals. There was considerable research into Meniere's in the 70s-80s, also. This is really beside the point. I'm not trying to knock you, either. The purpose of the comment earlier was to demonstrate demand creates product (in this case, research).
Before someone else jumps in and I have to defend myself, yet again, from illiteracy. ALS is worse than Meniere's. I'm not making the case that it is not. I'm not making the case that something deadly wouldn't create more attention per individual. I'm only saying that 100-200 people without ALS, pre-ice-bucket, would have to know of ALS for every single person that did have the disease in order to compare with mere number of Meniere's patients.
Nyynth, start your own site. Then you can point it in any direction you want and work with like minded people.
That is why I made a Discord. I just think working across groups is useful, too. I still feel like this is being warped into some weird competition and I’ve said before I think this site is useful. Tired of feeling like I’m on the defense when all I’ve requested is recommendations on where to donate and for those interested in greater activism to join the server. I’m sure someone is going to next take offense to ‘greater activism’ and cite this forum as the pinnacle of possible action and misread entirely what I’m saying.
We have had people come here to fund raise for that group before, infact i think at least 6 years ago. What progress have they made since then?
Alright. Hearing Health Foundation is probably the better option then. I kinda was beginning to believe so. Ironic this forum has already fundraised for them. Thanks for both the advice and clearing my reputation.
I wonder why, with all the anecdotal success with antivirals, and i am one so i think it is real, the drug companies that make antivirals dont do more research on that angle. Maybe someone could light a fire under them (for free).
No double-blind studies. I’ve seen this discussion in another thread and the person suggesting a study caught an enormous amount of flak. Without clinical evidence they’re not going to invest their money, as nothing is free. I know the Gacek paper exists, but the evidence is severely limited by both number and methodology. I don’t disagree that it would be useful. I’m for any form of legitimate research. I had a hard time even getting antivirals to see if they’d help me.
I'm no economist but it's news to me that big companies need encouragement to find ways of making a buck. If big pharma doesn't attempt to make money off something, then their testing/research/knowledge is telling them that, indeed, there's no money to be made from it. In other words, the fact that they haven't pushed the Meniere's angle indicates that antivirals aren't as helpful as some people would like to think.
Interestingly, I think I did see a small scale study by Valtrex, but I could be wrong about who conducted the test — and again, very questionable methods (36 participants or something, only objective metric was hearing test) — indicating some success with antivirals. I do not think they’re as effective as many here say they are, but maybe they do work sometimes. I do know the best shot for that kind of double-blind study is funding organizations specifically interested in ear health. Nothing is free. Even asking someone to light that fire under big pharma implies effort on someone’s part. The video I’m doing: coordinating with people and offering a level of good-will that has been reciprocated only by about half of my interactions, $1000 camera, gas to drive a county over. Probably a hundred smaller expenses in addition. I’m sorry to have to say it, but if we want change and solutions, we have to be the motivating force. Most (all?) here are young enough to live to see a cure or viable treatment if it was funded. 10-20 years tops? It’s a blind estimate, but I think a reasonable one. Fundraising does, demonstrably, encourage growth in medical fields and has cured diseases. My SO has been in Relay for Life for 4 years. Cancer treatment has accelerated ridiculously in the past decade. Due to the effort of millions of people like her.
I know studies are problematic because menieres is a syndrome, not an identifiable disease, so the study group will always have ailures no matter what you are trying. But it could be redifined with a result that say x% of menieres syndrome patients have symptomatic relief from our antiviral pill. Then doctors would be emboldened to try antivirals to see if the patient was indeed the viral-linked menieres syndrome or the non-viral linked menieres syndrome. Some doctors do this on their own but most need cover to go off label.
We've discussed this topic a number of times. I believe it was John of Ohio who indicated that there is just no money in it for big pharma when it comes to anti-virals. It's not a matter of whether or not the drugs are effective. Don't forget, there are already generic versions. Why would a company push a specific drug if they don't have a monopoly on it and cheaper versions are available?
You make a good point. Perhaps insurance companies would rather oay for a cheap drug than an expensive operation then?