Postponed video. Need recommendations on places to donate.

I am thinking https://menieresresearchaustralia.org/

VeDA doesn't fund research. Hearing Health Foundation is a possibility, too.

 

If anyone reading is wondering, postponed due to scheduling conflicts with participants. It's going up no later than early this week, no matter what circumstances.

I apologize, this is frustrating to me, as well.

 

Wednesday will be the day we're doing it -- I do not know if it will go up Wednesday night or Thursday. Depends on how long it takes me to edit and record an introduction. I have a new group 100% on-board and available. Scrapped the previous.

I will stay this course till it's understood, treated, and prevented.


_______________________________________________________________
Join our Discord for updates, donation/research links, and to discuss your ideas.
https://discord.gg/x6763pE

 

There are a few organizations that deal with research. Hearing Health Foundation is another. And there's a Meniere's UK website. Part of the purpose in trying to organize an active group/think-tank was to refine where funding should go as well as challenge-concept. I've asked here repeatedly, both privately and publicly.

I did want greater group engagement. Unfortunately that group ended up being fairly small. Mbgphoto79 would vouch for my intentions. Maybe Mac, I'll let him speak for himself. I have made numerous threads to this end.

I've been somewhat public with my identity. You can investigate the websites yourself -- I have a bit. In fact, I really encourage investigation as I haven't had the chance to contact them personally. I invite everyone to independently verify the website so I do not link donations to the wrong place.

 

Place I'm uncertain about: The Whirled Foundation

Not sure if they support research. Interesting read there, though. About middle-ear dystonia.

 

I appreciate that, mbgphoto.

I absolutely do not want to be donating to the wrong place. These websites are fairly difficult to choose between. I understand why menieresaustralia looks dubious. And, y'know, it might be. I'm coming here seeking collective advice about where I should donate. This was one of the places recommended to me by a person that appeared fairly involved. I'm not infallible, but I sincerely want to cure this.

I don't want to be the only person involved in these decisions. I want us to come together. The Discord was made for that reason. Real-time discussion. Democratic decision-making. Filtering out bad ideas with the wisdom of the crowd. Debate isn't allowed here -- and I don't want the Discord to become blood-sports, either. However, I do believe debate leads to better ideas and would like to see some healthy argument. Peer-review leads to better ideas. We have been abandoned by the medical community. We are all we have in this fight.

 

Hearing Health did seem like a good option when I checked out their site. I just wish it was more Meniere's-focused instead of, what looks like, about a third of their agenda. I spoke to a couple other people that said they appeared reputable, too. Might be the option I ultimately go with.

As far as what I'm trying to organize. Direction. Organize connections. Organize campaigns. Subject ideas to argument thereby refining them. This is a coping site. Every community I've found is about 'coping'. I'm not about coping. I don't require an online community for something that needs to come from within me. I understand why others would find it useful; if I talk to anyone about how it makes me feel I'd prefer something personal.

I want a different type of community ready to actively make solutions.

Thank you for weighing in. I'm increasingly more sympathetic to hearinghealthfoundatioon instead of menieresaustralia.

 

I comment on other posts in order to support people that do find utility in the comfort of an online community. Personally, I would rather speak to a person one on one if I'm seeking counsel. This is all I said.

I do not pretend to be an expert. I've read a variety of theories and I don't know which I subscribe to with confidence, anymore. I am asking for greater proactive involvement so as to fund the experts. I have pointed out in other threads what has been done by certain individuals is very commendable. I mentioned JOH by name. I've mentioned Mac by name. I've mentioned others by name.

This thread is a request for recommendations on places to donate. It has resulted in some productive conversation. I have linked, somewhere, studies to the antiviral effects of mushrooms. Every newcomer I see, I try to inform with the basics presented by this forum. I've also pointed out there's a study available on the WhirledFoundation website that is pretty interesting -- Meniere's possibly being caused by middle-ear dystonia. Certain types of debate do appear to be banned from this forum. It is in the stickied thread.

I am organizing and recording a video-challenge on my own time and am constantly at odds with myself over how I should introduce it and where I should link donations. I've posted all over the internet about this disease and actually managed to get it in front of an audience of a few hundred on a livestream. I've also contacted multiple Facebook groups to ensure the challenge-video is put in front of an audience.

You do not know what I have or haven't done and are assuming I've done nothing at all. I have not done as much as some people, but this is how I am trying. If you want to read malice in what I've written, I can't stop you, but I did _not_ intend it. This site has yielded some useful information -- unfortunately little corroborated with medical trials. This is the part I'd like to change. I'd like there to be more involvement from an interdisciplinary medical community and that is done by relating interest in the disease and funding.

This place is valuable. However, from what I've seen, after scouring hundreds of threads, there is little to no fundraising and no consensus on where donations should be made. I have found one video-challenge and it was a mother and her children on FB with marginal engagement. _Not that I'm trying to belittle her effort_, only that I feel another attempt should be made.

I feel for every person with this disease. I feel for every person that has had this disease. I feel for every person that will have this disease. I am sorry I didn't phrase something as delicately and with enough caveats as you would have preferred.

 

https://www.youtube.com/watch?v=JWaVot7J1xs

Expand the first comment. Heather is my SO -- I was using her account because I hate seeing Meniere's videos crop-up in my feed. What links are provided there, Pupper?

 

I'll use the ALS example. Before the ice-bucket challenge, it was virtually unheard-of. Very little academic research. Few dedicated persons or labs. If interest doesn't exist, I believe it's our responsibility to create it. I've discussed on the forums how it may be in our interest to tackle an umbrella of diseases with hypovestibular symptoms or deafness. Industry is propelled by the amount of money and public interest in the field. Meniere's is far more common than ALS -- albeit not as bad, either, but massively more common.

The medical community is not the catalyst for where resources are allocated -- public interest delegates funding. I think expecting the medical community to some-day have our answer without any effort on our part simply shifts the onus on the medical community, rather than us. Without awareness and fundraising, the field will never grow or attract new people or disciplines. Consumers decide the market.

I do believe this is why it's critical we fund the correct organization and encourage viral-awareness so the funding doesn't simply disappear into a medical complex without resolution.

Members here could attest to the power of a devoted individual in changing the course of medicine. It's like any other market. There has to be a push for demand. We have to be the vocal party.

 

Yeah, please elaborate on my brilliant plan to swindle money from a forum I'm not requesting donate directly and am asking where donations ought to be made, Pupper.

I'll be here when you've collected sufficient evidence to support your misguided witch-hunt.

 

I'll ignore the veiled insult and choose to appreciate the cease-fire.