MEBO RESEARCH FOUNDER
AND EXECUTIVE DIRECTOR
AND EXECUTIVE DIRECTOR
Many sufferers call the MEBO phone line or email me personally in hopes to receive expert consultation and advice. Please be informed that I am not an expert, and for this reason, I am not available or qualified to give one-on-one counseling to sufferers. This role or function was never my intention when I founded MEBO simply because I am not qualified to do so. As a complement to my Intro Letter post of April 10, 2008, I would like to clarify my position and role in MEBO Research as the Founder and Executive Director.
Since I am not available or qualified to give one-on-one counseling to sufferers, and since MEBO consists of a fully volunteer staff of sufferers and family members, there are no experts available to offer telephone consultations or available to answer large volumes of emails.As noted in my Intro Letter, I am a mother of a Primary TMAU sufferer who has responded very well to the TMAU odor-management protocol. It is precisely because of my son’s condition that I founded MEBO Research with the sole purpose of promoting research to find a better more reliable treatment, and ultimately a cure. There is no cure at the present time and experts do not foresee a cure in the near future. We can only hope for a better, more reliable treatment to come out of the research currently underway in the United Kingdom and the United States. In the meantime, since Secondary TMAU was not being tested in the US, I found it beneficial to start the TMAU Test Program with the Cleveland Clinic in hopes that Dr. Stanley Hazen's research may bring about an effective treatment to control TMA levels.
Since I am not available or qualified to give one-on-one counseling to sufferers, and since MEBO consists of a fully volunteer staff of sufferers and family members, there are no experts available to offer telephone consultations or available to answer large volumes of emails. Therefore, MEBO has gone to great lengths to interviews experts, work with RareConnect to hold webinars given by experts, and to gather literature on Trimethylaminuria and other body and breath odor conditions found in professional journals to post about them in the MEBO Blogs.
In addition, I have put in place a secret, totally private online support group, which consists of a few hundred members that is thriving very well. No one outside the group can see participants’ names, usernames, or pseudonyms associated with MEBO or anything written in this site. In this group, there are sufferers who have many years of experience fine-tuning their respective odor-management techniques, who are very willing to give excellent testimonial to each other and to new members. The topics most discussed in this group are the expert-prescribed odor management protocol and recommendations, and how to face the challenges of school environment and the workplace among other topics. I’ll be happy to invite anyone interested to this group for help and guidance. If interested in being invited, please notify email@example.com.
María de la Torre
Founder and Executive Director
A Public Charity
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