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Thursday, March 29, 2012

Empowering sufferers with a voice and a means to pursue research

I would like to thank everyone who participated in the discussion in the post, "Discussion on the MEBO-Menssana Alveolar Breath Research Study." Please feel free to continue posting your opinion in that post, and let your voice be heard! It is OK to post anonymously, if you prefer. It is MEBO’s intent to give a voice to sufferers when most if not all feel no one listens and understand. With posts like this one, MEBO is attempting to empower sufferers to make a difference. Brainstorming new and innovative ideas are always welcome, including opposing views.

MEBO Research is a sufferer-funded, patient-advocacy group intent on pursuing research to understand the causes of body odor and halitosis conditions of all types. These conditions include, but are not limited to, malodor intra-oral and extraoral halitosis, malodor presenting in all parts of the body such as generalized body odor, TMAU, bromhidrosis, groin odor, out of the ordinary vaginal and anal odor, IBS related fecal odor, and others.


No one individual is MEBO Research;
all sufferers are invited to be MEBO Research.
It is up to sufferers to come forward and be a part of this movement, influence its direction with each persons's opinions and participation. No one individual is MEBO Research; all sufferers are invited to be MEBO Research. We will very soon be inviting sufferers and their families to register as MEBO Research Members free of charge, so that we can be called upon to participate in research (on a voluntary basis without obligation), and in raising awareness mass email/letters campaigns, etc.

MEBO WILL SOON BE FUNDRAISING
TO COVER SOME OF THE COST OF
THE MEBO-MENSSANA ALVEOLAR BREATH RESEARCH STUDY

Menssana charges MEBO $300/USD for each sample we send them for analysis, and there is no limit to how many samples MEBO sends them in a period of one year. Menssana has covered the initial shipment of the BCA instrument to Mike in Chicago along with the required attachments, but MEBO is responsible for shipping the mouthpieces back to Menssana, and for shipping the BCA instrument to all the testing sites within the US and abroad, including shipping insurance and Custom's Inspection fees. There have already been expenses, such as the cost of registering an Institutional Review Board (IRB) with the US Federal government, to ensure that this study is of a high caliber and each subject is duly protected with this ethics committee. There is also the expense of renting a location in each city where sufferers will gather to take the test, and an insurance policy required by Menssana. As one would imagine, these costs do add up very quickly.

It is up to sufferers to come forward and be a part of this movement, influence its direction with each person's opinions and participation.
The MEBO community needs to brainstorm to come up with fundraising projects to cover these costs. Brainstorming, thinking outside the box, and proactive participation from the whole international community toward this purpose is much appreciated.

I thank everyone who has given their comments regarding this test, and ask for more participation from all sufferers around the world.

María

María de la Torre
Founder and Executive Director

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