Hello everyone, I've started a cause on Facebook - Support Trimethylaminuria Research. I hope to get as many members as I can so that I can raise awareness, and get some donations to the Monell Chemical Senses Center. If anyone is interested, please go to this link:
http://apps.facebook.com/causes/causes/show/99390?m=8905f&recruiter_id=10942416
It’s certainly the right idea, although personally, donating to Monell isn’t high on my list.
Personally I think ideally we need to start up a new fund of our own. Not just for tmau type body odor, because many with fecal body odor (probably the biggest BO problem on the forums) don’t ‘identify’ with tmau (rightly or wrongly). Longterm, I think we need a BO & Halitosis research center, by far the cheapest way for the world to deal with this issue, and also probably the most effective. You could be talking about 1% or more with this problem (to a transient extent).
The sad thing is, the right sort of fund, I think the money raised would shock the medical community, because it would be a chance for the sufferers to show their numbers both by the money raised, and also by the amount of sufferers.
If you wanted to stick to tmau funds already set up, theres the Nord TMAU fund, or a few other alternatives.
But my own opinion is that we need our own new fund.
Thank-you very much search4cure for the feedback that you have given me, I really appreciate it.
TMAU possibly affects me, so that’s why I used it as a starting point for my cause.I will either change the cause I have started, or start a second cause for BO/Halitosis as well.
The main aim is to raise awareness, educate, and raise money for the cause. I wanted the donations to go to the research facility that is currently doing the most research, or is the best one to raise money for.
On Facebook, I can only add a beneficiary if it is listed there. I started with the Monell Chemical Senses Center because it was the main one that I knew about at the time. I will look up the Nord TMAU foundation on Facebook and see if they are listed.
What other funds that are set up already, would you recommend for TMAU, or funds that do research on BO/Halitosis?
I think that your idea of setting up a fund of our own, and a BO & Halitosis research center is a great idea. I would love to see that happen, and if I had the money and support, I would even start it myself.
I’m not totally sure of any TMAU funds. The ones I am aware of are :
TMAU Foundation
NORD TMAU fund (not sure how to directly make sure the money goes to TMAU research though) www.rarediseases.org/helping/donate link currently doesnt seem to work.
HBRI (they do FMO3 research and test the FMO3 DNA, but I don’t know what the donations go towards) http://www.hbri.org/
I’m sure the above do good things but I don’t know what any of the above do with the donations.
Personally, I think the best way would be a new fund. On the BO forums, it seems to me almost all could be a metabolic body odor issue. Everyone on the boards washes a lot. It seems to me theres 2 types of BO, internal and external (metabolic and surface). So if the focus was on internal causes (metabolic body odor), I think it would get a lot of support. I also think metabolic halitosis may be the main reason for the halitosis cases on the forums (since they obviously are thorough with hygiene).
I think in this case, the sufferers should set the agenda. It seems to be the last hidden ‘antisocial health problem’. A research center would be a long-term goal but raising awareness etc is a good starting point and very important. The ‘avalanche’ of sufferers would happen if someone was on the media and said they had ‘fecal body odor’. That seems to be the most common BO problem.
I don’t know about money but I’m sure you will certainly have lots of support
Even if you set a small first target of raising money to put a website up, it would be an opportunity for us all to ‘show our support with money’, to a cause that we felt was going somewhere. At the moment I don’t mind where I put money as long as I understood what exactly it was going to do in relation to metabolic body odor.
I am doing a research paper on Trimethylaminuria in an APA style for a class that I am in. I was wondering if there was any way that you could help me out any. I have a little bit done now if you want to take a look at it. If you could help me, that would be greatly appreciated. Let me know asap.
Medical Assistant Student
Hello Shalyn,
I would love to help you out in any way that I can with your research paper. I would really love to have a look at what you have done on your research paper so far as well.
I gather you have probably read my story, it’s turning into a novel:) I am nowhere near finished yet. I am constantly refining it, and adding things as I remember them.
I wrote it so that it would raise awareness of TMAU and other Body Odours, and to help other people.
I also wrote it in detail, and as accurately as possible so that doctors can read it, and know what my symptoms are, changes in diet, tests I’ve had, and what I’ve tried to eliminate the fish odour, and also the psychological effect having a fish odour/halitosis has had on my mother, aunt and I.
Hopefully when I get my story done, even before then would be better, I can work to get an actual diagnosis/proof that we may have a genetic mutation related to TMAU.
Let me know the method of correspondance you would prefer. If you want to send me an email, my email address is kjugueta@bigpond.com.
Thank-you for your reply, I really appreciate it,
Kristen.