February 5, 2010 saw the first anniversary of
MEBO Research, registered in England as a limited non-profit company. It hopes to become a charity, and it would need £5000 in assets to register as a charity in England. MeBO sees itself as a patient advocacy group on behalf of systemic body odor sufferers particularly by raising awareness and promoting research.
It has been a busy year in 2009, getting the paperwork done correctly to establish this nonprofit organization. Nevertheless, it was deemed important to get the first 'special forces' study going,
and this was started with the help of Biolab Medical Unit in London. The MeBO-Biolab Gut Dysbiosis Study was begun, with the volunteers kindly paying for their own tests. So far 5 results have been returned with more pending, and more volunteers applying to be tested. Part of the objective of this study is to encourage professional researchers to take a note of the results and perhaps give them ideas for research, as well as the study being useful in itself to each volunteer and other members of our community as patterns emerge from the results.
For the 2nd year, MeBO switched to a new 'official address' for £47 (per year), since the old one was more costly. Last year, Maria paid £89 from her own money for the address, but the renewal for the year 2010 for £47 was paid with the funds donated by the community, for which we are very grateful. A yearly address is needed to keep the company in proper legal standings.
Old address (2009):
Minshull House
Stockport, SK4 2LP
United KingdomMEBO Research's new address is:
145-157 St. John StreetLondon EC1V 4PY
England
UK 0800 0588015 / US 786 228-6880
So far £530/$862 has been raised, for which we are very grateful. One of the aims in 2010 is to reach £5000 goal to become a charity and hopefully register in the U.S. as well. However, if community opportunities arise, it may be deemed important to fund MeBO's causes too, as we invested £125 in the
MEBO-Biolab Gut Dysbiosis Study, and an additional £902 needed to cover the cost of these tests were donated by the 5 volunteers for their own respective tests.
Donations will also be used for the upcoming
International Body Odor and Halitosis Webinar Series,
which will benefit the whole community for a long time to come; it will be free of charge to up to 1,000 attendees worldwide during each presentation. This webinar will cost MeBO £100 a month for the duration of the Series.
DONATIONS FOR THIS WEBINAR SERIES WOULD BE GREATLY APPRECIATED.
The more funds raised, the longer we can receive valuable presentations from the experts and thus increase our opportunity to fund raise for research grants and to raise awareness and understanding of our condition.
PLEASE HELP!
Your donations would be greatly appreciated by the whole community.
María de la Torre
Raised: £530/$862
Contribution to Study: £125/$203
Companies House Registered Office Address fee: £47/$73
Current balance: £358/$560
updated 08FEB10
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A friendly reminder for those interested in attending our meetup, you have only 21 more days to book a suite at the Embassy Suites Nashville Airport Hotel for the March 20th and 21st weekend. On March 1st, those suites not reserved will go back into the hotel inventory, and will then be offered at a higher rate to the general public.
The MEBO Research rate is $99/night for either a two double-bed room or a king-bed room, including a full daily breakfast, 2-hours daily Manager's reception, and airport shuttle service per person.
If you haven't booked your suite yet, or have booked it at a higher rate, you can change it to the MEBO Research rate by giving the following special account code:
Group/Convention Code: MBRThis rate is available for up to 20 suites on the 19th 20th and 21st of March, and is extended, subject to availability, two days before and two days after as well.
So far, approximately 20+ people have booked to attend from all over the country and from London.WHY DO WE MEET-UP?
The USA community is ready to experience the transformation that comes with the special bond created with a
'pilgrimage' to a meetup. As Arun Nagrath tells us in his video recorded during the London, Thames 2009 Body Odor & Halitosis meetup (see video in right sidebar),
...we had discussions, very intriguing, intellectual discussions, very spiritual discussions, and very emotive discussions that really touch the heart that made you realize and feel as if you were actually looking into a mirror and talking to someone whose experiences have been exactly what you've been going through. And it was so touching inside...we started to bond, and I can see those feelings of depression, of anxiety, of hopelessness, just fade away, and I can actually see a sense of utter calmness in their voice in their appearance - all this in the space of one day...as if we've been through some kind of magical emotional healing experience...
Everyone from around the globe is invited to experience with us our Southern style reunion in our first Annual Body Odor and Halitosis USA Meetup in Nashville, Tennessee.
Nashville meetup 2010 : are you interested in attending ?
Accomodation preference
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The 28th February is Rare Disease Day, and the fundraisers at rrr-tmau.org have come up with the idea of making it 'International TMAU Day', with the main object being to see how much we can all raise towards the NORD TMAU Fund. Anyone can donate online using the instructions on the TMAU day website they have constructed. It doesn't matter how little you can donate. Well done to Cheryl, Amanda, and Joel for all their work. Recently, someone anonymously gave a $2000 donation, probably after Cheryl's story was aired again on the Discovery Network. Let's help them to help ourselves.
Any ideas for fundraising ? Let the community know
related links :
rrr-tmau.org websiteCheryl's TMAU story on the NORD website
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As mentioned previously, it has been decided not to schedule the Body Odor expert webinar with the upcoming Nashville meetup 20-21 March, but instead to invite speakers to a series of separate webinars where everyone can watch from home, and there will be no time constraints. We have invited most of the experts who were at the TMAU 2002 workshop and are known to have an interest in FMO3 enzyme and TMAU. We are pleased to announce that the response has been very positive and so far those who have kindly agreed to our initial series of webinars are :
Dr. George Preti, Monell Chemical Senses Center, Philadelphia, USA
Dr. Paul Fennessey, University of Colorado Denver,USA
Dr. John Cashman, Human BioMolecular Research Institute (HBRI), California, USA
Dr. Eileen Treacy, Childrens University Hospital, Dublin, IE
Dr. Ian Phillips, Queen Mary University, London, UK
Dr. Elizabeth Shephard, University College London, UK
Dr. Irene Gabashvili, San José University, oversees MEBO's Research Studies, California, USA
We are most grateful and uplifted by the enthusiasm of the experts to wish to communicate with the body odor community. Initially, the first series of webinars will mainly involve experts associated with TMAU/FMO3, but it should be kept in mind that the FMO3 enzyme deals with many sulfides and amines, and so there may be a connection yet to be proven. Also, many of the experts have great knowledge in the whole set of biotransformation enzymes (xenobiotic enzymes), and some have expertise in other metabolism problems.
No scheduling or fixed plans have been made yet. The provisional plans are to use the gotowebinar software to host the webinars, which will allow up to 1000 guests to view the presentations. The series of webinars are likely to start late March or early April, and although a day hasn't been decided, it seems likely that a Sunday would accommodate most world timezones and suit the experts (?). We also hope to record and host the webinar videos on our website, if the experts give permission (possibly edited).
The format of the webinars is provisionally planned as breaking the presentations into 3 phases: Phase 1 would be the host introducing the guest who would then give a presentation. Phase 2 would be agreed written questions asked by the host or other people or a similar format, and Phase 3 would be the audience asking questions by text or by audio (scheduled via a coordinator). Nothing is decided yet.
To view the webinar, most people's computer systems will be ready to view it with no problem. To participate, anyone should be able to send chat messages. Anyone wishing to speak to the expert would need to have a mic. A cheap headset would do. All questions would be moderated and queued, such as radio stations use. It will be free for everyone.
The program costs $100 a month, so the plan is for MeBO Research to take the program for 2 months, and then it will depend on circumstances. Possibly the webinars could continue in some way with guest experts from various areas of the body odor and halitosis field.
We hope have it up and running in time for the Nashville meetup, and perhaps some of the people who couldn't attend Nashville can join us at a set time to chit chat with us. Anyone would be able to join in by video/audio with a webcam and microphone, or with just a microphone, or on the chat line. Or perhaps we could have an international online get-together to try it out. We'll see if we can get it all set up to try it out during the meetup. If all goes well, we'll be able to start our International Body Odor Webinar Series with the experts in the days and weeks to follow.
We will keep you regularly updated about the plans.
Notable body odor associated medical papers by the guest experts : (to follow)
Dr Cashman : Transient trimethylaminuria related to menstruation
Dr Treacy : Trimethylaminuria and Deficiency of Flavin-Containing Monooxygenase Type 3
Drs Phillips/Shephard : Gene Reviews entry for Trimethylaminuria
Dr Preti : Genetic influences on human body odor: from genes to the axillae
Drs Fennessey, Cashman et al : Biochemical and clinical aspects of the human flavin-containing monooxygenase form 3 (FMO3) related to trimethylaminuria
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which will benefit the whole community for a long time to come; it will be free of charge to up to 1,000 attendees worldwide during each presentation. This webinar will cost MeBO £100 a month for the duration of the Series.
Watch the recent Mystery Diagnosis episode about trimethylaminuria
MEBO Research: researching systemic body odor and alveolar-halitosis
New: the people's Body Odor Forum. Set up and owned by Arun Nagrath
Kristen's new blog : www.kristenjugueta.com
Write an essay, poem or short story on your odor problem for Richards anthology project
