Where we’ve been, and where we’re going 2011-12 Part II

I am elated to say that thanks to the inspiring outpour of innovative ideas from very proactive volunteers that keep increasing in numbers at a rapid pace, there are so very many ongoing MEBO programs/projects that it becomes a challenge not only to note them all in this post, but to even keep up with them all. MEBO is growing in leaps and bounds, and I believe it is due to the brainstorming approach that drives our two companies forward under one flagship.

Every time someone approaches me with an idea of what needs to be done, my first thoughts are, “how can we make this happen?” And before you know it, a new program or project is formed. So please, keep your ideas pouring in, and please know that we are always looking for an extra pair of hands to help with any and all of our ongoing program.

At the end of each year, I like to “think outloud” to our community, and I write a post about what MEBO has been involved in throughout the year, and where we are going in the future, while always being open to new possibility as we go on our journey. Along with bringing to fruition in 2012 all the current programs launched in 2011, my primary focus for 2012 is to upgrade the company registered in England and Wales to charity status.

Let me take this opportunity to explain how MEBO has strategized to represent our entire international community around the world with two main hubs, one in the Western Hemisphere and the other in the Eastern Hemisphere. Per our attorney’s recommendations, MEBO Research consists of two separate companies, one registered in England and Wales and the other in the United States. MEBO Research, Inc, is a 501(c)3 Public Charity in the US (herein referred to as MEBO US), and the not-for-profit Limited by Guarantee Company aspiring to become a Charity is registered in England and Wales as MEBO Research (herein referred to as MEBO UK).

MEBO Research would like to extend our most sincere gratitude to all those who have been instrumental in the operations and growth of our programs, including but not limited to those persons noted below. Thank you!

Where have we been in 2011?

1. Held MEBO US Second Annual Meetup in Washington DC on April 9th and 10th.

• a. Dr. Cheryl Field’s Disability Benefits Presentation at meetup via conference call
• b. Dr. Elizabeth Shephard’s TMAU/FMO3 slide show presentation on an overview of TMAU in relation to the genetic deficiency of FMO3 enzyme
• c. Presentation from the literature Dr. John Cashman’s provided for the meetup and his subsequent interview for MEBO’s blog

2. 

   NORD Fund (Scroll down to see all posts) – MEBO joined forces with Cheryl Marshall, who spearheaded this program, supported by numerous sufferer organizations and forums. MEBO published more than 23 posts in both our blogs (English and Spanish) to help raise $35,000 to obtain NIH funding for TMAU research. The grantee of NIH funding for genetic research, Dr. Danielle Reed, Monell Chemical Senses Center in Philadelphia, was announced in December 2011. Our profound gratitude goes to Cheryl Marshall for having initiated this effort on behalf of our whole community.
3. Initiated MEBO-Cleveland Clinic TMAU Testing Program (Scroll down to see all posts). Dr. Stanley Hazen, M.D., Ph.D. Vice Chair, Translation Research. Lerner Research Institute, is currently researching for the best testing method to prevent any TMA leakage from urine collection to sample analysis, including utilizing the most economical storage and shipping method. Testing will resume in the 1st quarter of 2012. See Message from Dr. Hazen.
4. MEBO US New Director of Finance, Mike, who is a certified grant-writer,
• a. has written numerous grant proposals for MEBO,



• b. Taken the initiative to approach Dr. Michael Phillips of Menssana Research to launch the Alveolar Breath Research Study in the 1st quarter of 2012. Dr. Phillips has donated the use of 3 instruments without charge to MEBO Research to be shipped for a period of one year around the world, initially in the United States, England, and Australia.
  This study involves collecting alveolar breath samples to detect volatile organic compounds (VOCs) originating from the lungs as opposed to oral cavity, to identify up to 200 VOCs that may be or may not be producing body odor and halitosis conditions, as noted on the chart of the above mentioned post.
  
  This research seeks to identify peaks in VOC levels in sufferers compared to a control group under the monitoring and review of one or more institutional review boards (IRB), also known as ethical review board (ERB). See latest Update post.
• c. Mike also created the MEBO Petition that has received over 350 signatures from persons in 31 countries. This petition will be used in MEBO’s International Raising Awareness Campaign with medical, political, and educational institutions around the world as well as for grant-seeking efforts. Many signatories have chosen to remain private (removing the checkmark by clicking the box that says, “Display my signature publicly”), and their signatures are not displayed online or found with a search engine. This is truly an international effort, as we have already received signatures from sufferers, family members and supporters of 31 countries, and the list keeps growing. We hope to receive many more signatures until we have representation from every country in the world.
5. MEBO US Public Relations Director, Glenna Gonzalez (scroll down to see all posts), who was very instrumental in the organization of our Washington DC Meetup, also attended the sixth annual Genetic Day on the Hill sponsored by Genetic Alliance, the world’s leading nonprofit health advocacy group. See post, On Capitol Hill for MEBO Research. In this event, Glenna met with Congressional Staffers of two Senators, three House of Representatives, and the Republican Majority Leader. It is now up to sufferers to promote the signing of the Petition so that we may receive the 50,000 signatures needed to be able to present them not only to local State Representatives and US legislators, but also to the United Nations and scientific/medical organizations throughout the world.
6. MEBO US Community Outreach Director, Dr. Cheryl Fields, Ph.D./ABD in Human Resources Management,
   
   has been available to assist many sufferers who have turned to her for guidance via email and telephone conversation. She has written a very valuable presentation on Social Security Disability for our community, in hopes to keep us well informed of all our options. Cheryl also offers our community uplifting seminars free of charge for the asking.
7. MEBO’s Scientific Director, Dr. Irene Gabashvili launched her Aurametrix program (Scroll down to see all posts) . This program is a new software solution helping people understand the relationships between their diets, medications, daily activities and body odor. See post, New study “influence of diet, medications and behavior on odor” as well as other posts written by Irene’s other posts (Scroll down to see all posts).
   
   Participation in this free of charge program is encouraged. By doing so, you would have the opportunity to proactively help acquire data for this analytic program that would allow for a better understanding of the causes and triggers of odor.
8. Karen James led the way for our international community to participate in the Raising Awareness Campaign (Scroll down to see all posts) aimed at the UK medical system.
   
   As a result of her leadership, ten body odor questions on “Nutritional metabolic and endocrine disorders > TMAU” were published in the Database of Uncertainties about the Effects of Treatments (UK DUETs), and can be seen in the Library of NHS UK. Six (6) of these listed uncertainties have referenced their source to MEBO Research (see, "View Details of each question"), and four (4) of them reference the source to the DUETs Editorial Team.See more posts on Karen James (Scroll down).
9. Translator volunteers who have translated many posts from this English blog and MEBO’s website to MEBO’s Spanish Blog, presenting MEBO’s programs, including translating the Petition into Spanish and into Portuguese, as well as other posts related to our Raising Awareness Campaign, fundraising programs (including the NORD Fund), testing and research study programs. Some of these volunteers have written their own interpretive and inspirational posts.
   
   All of Latin America, Brazil, Portugal, Spain, and Hispanics throughout the world are profoundly grateful to these translators for being instrumental in uniting Spanish, English, and Portuguese speaking sufferers around the world in a common effort. Translators of other languages are always welcomed to translate any post of their liking published in any of the MEBO sites to be posted in MEBO's sites, and email it to maria.delatorre@meboresearch.org.
10. Much appreciated are the countless hours throughout the years that MEBO's Technical Consultant has dedicated towards the design of the MEBO website and Requisition/Survey Forms that were designed with the potential of generating reports that may assist in future research efforts.
    

Where are we heading in 2012?

1. Continuation of MEBO’s International Test Program
• a. TMAU Testing with Cleveland Clinic (See #4 above)
• b. Alveolar Breath Test and Research Study with Menssana Research (See #5 above)
2. After these two programs are operational, MEBO Research would like to explore other test and research study possibilities, including DNA testing/research. We will also be looking into the use of a Nuclear Magnetic Resonance instrument for testing and research to detect VOCs identified in the Alveolar breath test as being elevated in body odor and halitosis conditions. Once some causes of body odor and halitosis conditions are identified, we hope to then initiate research into treatment possibilities.
3. Upgrade MEBO UK to Charity Status in England and Wales
4. MEBO UK to then become a member of EURORDIS, Rare Diseases of Europe
5. MEBO US to become a member of the National Organization for Rare Disorders, NORD in the US
6. AJ McClay, MEBO UK’s Assistant Executive Director and Dr. Cheryl Fields, MEBO US’s Community Outreach Director will be launching their new respective monthly online Newsletters. All sufferers around the world will be welcomed to subscribe once these programs are launched.
7. Mebopetition Support Group, a chat group organized by Skunkhugs from Seattle – goal is to unite sufferers across the various bb & bo boards to work together in organizing meetup hubs, initiating a meetup in the Western US (Seattle, WA), hold international conference calls, raise awareness, and fundraise for research. He will also be starting a Newsletter for Jimi’s site in 2012.
8. Continue to pursue grant-seeking efforts and fundraising activities to initiate research into the causes of body odor halitosis conditions, its treatment, and cure.

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Hold MEBO’s annual meetup in the Spring of 2012 at Miami Beach and assist in the organizational efforts of additional mini-meetups at many locations throughout the world.

When life gets too hectic with much too many mind-boggling pressures and negativity, I like to get away and escape into nature, surrendering to its pace and rhythm, and it calms me. Leaning back on its beauty in perfect meditation regenerates my soul. I then return to my real world refreshed and recharged prepared to share this special moment I captured in my pictures with you through this video. I hope you enjoy it as much as I have enjoyed creating it. María

María de la Torre Founder and Executive Director A Public Charity www.meboresearch.org maria.delatorre@meboresearch.org MEBO's Blog (English) El Blog de MEBO (español) The MEBO Forum Please sign the MEBO Petition

MEBO Research

Calling all creative people

send in jpgs

One problem with blog posts is that they can look very dull without some image to catch the eye, which also acts as a reminder of the post too.

Images wanted to brighten up posts
MEBO Research would greatly appreciate if anyone would like to send in jpegs/pngs etc that we could add to the posts to give them identity. We would especially like uplifting images, but any type will do. Images of nice views or objects or animals or symbolic or abstract or even of yourself if you wish, would be greatly appreciated. Or it could be art. If there is some credit or phrase you would like beneath the image, we will see if this is possible too. If you are concerned about 'exif' details in the image, either you can remove it yourself before sending, or we will delete it for you before publishing. The images will end up in our google picasa page by default.

Original music wanted for MEBO Research videos
Currently MEBO have some videos with music, but it is the song copyrighters who get the income from the google ads on them. If we occasionally make videos, it would be great if we could potentially raise some money for MEBO by getting any ad money ourselves. To do this we would need original music (not copyrighted). If anyone would like to send in copies of their original music (eg mp3, wmv, audio formats) we will keep it in case we can use it in a video anytime. We will credit the person or add their message if they wish.

You can send in any image or music to : meboresearch@gmail.com

So let your creative juices flow and we will see what we can accomplish. Thank you

MEBO Research

Presenting MEBO UK’s new Assistant Executive Director

It is with great pleasure that I announce Adrian J. McClay’s acceptance of the post of Assitant Executive Director of our not-for-profit Limited by Guarantee Company, MEBO Research (MEBO UK).

AJ's enthusiasm is inspiring and energizing, or should I say, “energising” as our British friends would say. He is now registered with this title with the Companies House of England and Wales.

Right before he left on holiday, AJ went over some ideas he had been thinking about, which he had noted on a piece of paper. This is what he said,

1. He would like to unite the various body odor and halitosis organizations and forums, though remaining separate entities, to work together as one for common causes.
2. AJ would like to kick off a monthly online MEBO UK Newsletter project. And as we brainstormed about this very exciting idea, we touched upon the importance of not only giving the news about what’s going on with MEBO, but also about any event or project that may be happening in the other forums and other bb & bo organizations, whether fundraising drives, meetups, organizing press events, testing or research programs, etc. – the sky is the limit! And of course, to complete this picture, I would LOVE it if this expansive effort would also receive input from other language sites as well.
3. As soon as Dr. Cheryl Fields, MEBO US Community Outreach Director heard about AJ's interest in doing the MEBO UK Newsletter, she jumped with excitement about doing a sister MEBO US Newsletter, and she’s looking forward to meet with AJ to discuss this further when he returns after New Years Eve. This is a perfect example of how excitement is contagious. Cheryl had mentioned starting a Newsletter before in the past, but now doing it with in conjunction with someone else makes it even more fun!
4. After Jo Jo in Seattle organized the Skunkhugs Skype Group to brainstorm on MEBO’s Raising awareness campaign, meetups, testing/research programs and fundraising projects, Jo Jo, who is also a moderator in Jimi’s Bad Breath Halitosis.com forum, is going to start a Newsletter for Jimi’s site using the same inter-organizational platform with Jimi’s consent.
5. AJ is also very interested in pursuing all avenues to ensure that MEBO UK will become a Charity in England and Wales, as MEBO currently is in the US.
6. Both AJ and I are keenly interested in developing the MEBO UK directorship with additional proactive directors so that we can expand our reach to all the countries in the Eastern Hemisphere. Obviously, directors of the UK company do not have to live in the UK, as I live in Miami, and the same goes for the US company. Let's think outside the box so the sky will be the limit!

These ideas that AJ presented are only scratching the surface of his innovative thinking, and I am looking forward to his return to begin our new venture of developing MEBO in the UK and the whole of the Eastern Hemisphere. Anyone interested in being a part of this pioneering work for MEBO, please drop me a line at maria.delatorre@meboresearch.org.

WELCOME, ADRIAN !
IT’S LOVELY HAVING YOU !!!

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

Where we’ve been, and where we’re going 2011-12 Part I

Slideshow best seen on 720p HD full screeen

MEBO Research held its 2011 meetup at Washington DC. I attempted to introduce this great city to our community through this slideshow by gathering some pictures that other people had taken and put them together in a slideshow. Then a man and a woman were inspired by this and shared the beauty of their voices and superimposed over this slideshow a very appropriate song, The Star Spangled Banner

What a perfect personification of what our community is all about! It really doesn't matter whether they are sufferers or not or what these musicians' purpose was for doing this, but they are most welcome to join us! This is how we get things done, one person’s actions inspires another person’s thoughts and actions, which in turn inspires another's creativity… It's simple, but powerful!

Our main meetup in the Spring of 2012
is going to be held at

MIAMI BEACH

More information will be forthcoming
as soon as a date and time is determined.

ALL ARE INVITED!

There will be other MEBO mini-meetups around the world as well.

HAPPY NEW YEAR EVERYONE!

Where we’ve been and where we’re going – to be continued…

María

MEBO Research

MEBO cats at Christmas

Happy Holidays 2011 from MEBO Research

May your holiday season be filled with peace;

but most of all,

may your new year be filled with hope for a brighter future

in which dreams come clearly into view

and within your grasp.

The MEBO Staff

Quality of Life with odor condition

LET'S GET TOGETHER
IN RAISING AWARENESS WORLDWIDE IN 2012!

body odor/halitosis : what is your state of occupation ?

Are you happy with where you are in life, or is your odor condition interfering? In order to be a part of the solution, please be proactive in raising awareness by answering this poll : body odor or halitosis : are you achieving your full career potential ?

MEBO Research

Trimethylaminuria Foundation website

In our efforts to unite our various body odor, halitosis, and bromhidrosis international websites and forums, with the hopes of providing each sufferer with valuable information, the Trimethylaminuria Foundation has authorized MEBO Research to provide our readers with the link to the

Food Guidelines

section of their website (See menubar above). As noted on the bottom of their website, "This site is still being developed, so please check back regularly for additional information and updates." Even so, it is already looking very professional had has valuable information for our community. It is a work in progress, and they are happy to share it with us now, but please keep in mind that more comprehensive information will be forthcoming.

We are all very grateful to this organization for it very valuable contribution to our community for many years.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

Soluble form of human FMO3 for 'in vitro' experiments

Regular readers will know that the enzyme flavin mono-oxygenase isoform 3 (FMO3) is of particular interest to MEBO, given that it oxidizes many 'smelly' sulfide and amine compounds (and is 'officially' recognised as being the enzyme at fault for trimethylaminuria). Since enzymes deal with particular chemical structures, this means it deals with compounds that can be sourced from various sources; such as the gut flora, internally produced 'biogenic' amines (eg hormones etc), and drugs.

In the pharmacology industry FMO3 would be referred to as a 'drug metabolizing enzyme', partly because they will be trying to understand how their drug is metabolized in humans to 'help' them, and partly because they will afraid of future lawsuits due to bad reactions. Probably most understanding of the 'drug metabolizing enzymes' is discovered for these reasons.

FMO3 seems to have been the 'neglected' enzyme in this group of enzymes, but it seems it is finally getting some attention. So it is good to see that some researchers have come up with a form of FMO3 that seems to be easier to do 'in vitro' (analogy : in a test tube). It seems to be a soluble form that is easier for researchers to work with. Let's hope it is a technical leap of some sorts.

...The use of this soluble form of the hFMO3 enzyme as opposed to the usual microsomal preparations is advantageous for in vitro drug metabolism studies that are a requirement in the early phases of drug development by pharmaceutical industry.

Pubmed abstract : In vitro drug metabolism by C-terminally truncated human flavin-containing monooxygenase 3

Other FMO3 links
Flavin Mono Oxygenase : The other oxidase
Wikipedia : FMO enzyme family
FMO enzyme family : Structure, polymorphisms and role in drug metabolism

Neti Pot Deaths Linked to Brain-Eating Amoeba in Tap Water

By The Associated Press
Fri, Dec 16, 2011

Louisiana health regulators warned residents Tuesday about the dangers of using neti pots improperly. A neti pot, which looks like a genie's lamp, is commonly used to irrigate sinuses. The Louisiana Department of Health and Hospitals issued its warning following a second death this year caused by Naegleria fowleri, the so-called brain-eating amoeba.

use distilled, sterile or previously boiled water to make up the irrigation solution

A 51-year-old DeSoto Parish woman died after using tap water in a neti pot to irrigate her sinuses and became infected by the deadly amoeba, which entered the body through her nose. In June, a 20-year-old St. Bernard Parish man died under the same circumstances.

If you are irrigating, flushing, or rinsing your sinuses, for example, by using a neti pot, use distilled, sterile or previously boiled water to make up the irrigation solution," said Louisiana State Epidemiologist, Dr. Raoult Ratard. "Tap water is safe for drinking, but not for irrigating your nose.

It's also important to rinse the irrigation device after each use and leave open to air dry, he said...

http://health.yahoo.net/articles/flu/neti-pot-deaths-linked-brain-eating-amoeba-tap-water

MEBO Research

Update on the MEBO/Menssana Alveolar Breath Test/Research Study

MEBO/Menssana breath test : would you like to test ?

WHERE WOULD YOU GO
TO BE TESTED?

Please participate in the poll
only if you intend to go.

This poll is provided to help MEBO Research determine whether there is enough interest in the various locations being considered. We have tentatively selected these destinations, and if you are willing to travel to any of these destinations, please select the location of your choice.

Any recommendation on an inexpensive physical site (preferably at no cost or donated) in any of these cities would be greatly appreciated. If you will be testing in England or Australia, please send me an email telling me which city(s) you would be able to travel to for the test. MEBO and Menssana will also ask each participant/ research subject to answer survey questions to assist Dr. Phillips with his analysis. Once the design of the Requisition and Survey Form is finalized and ready to be published in this blog, more information will follow on how to set up your own personal test in this study.

MEBO Research and Menssana Research
are organizing an alveolar breath research study to explore biomarkers for body odor and halitosis. Please note that although the participants/research subjects will receive their test scores when available, the final interpretation of these scores will not be available until the one-year study has been concluded and Dr. Phillips has finished his analysis and paper. This program is in essence a research study and not a diagnostic test at this stage.

The use of three BCA 5.0 instruments were donated free of charge by Dr. Phillips for a period of one year, while MEBO works at obtaining as many samples as possible worldwide.

MEBO is currently working on the logistics of the administration of this test, which has been progressing as hoped. Since participants/research subjects need to be physically present to perform the test, they would need to go to locations where one of the three (3) BCA 5.0 instruments will be shipped to by MEBO. The use of three BCA 5.0 instruments were donated free of charge by Dr. Phillips for a period of one year, while MEBO works at obtaining as many samples as possible worldwide. This highly sensitive and accurate instrument will be calibrated to perform an analytical process designed and patented by Menssana Research. It will analyze systemic conditions involving 200 volatile organic compounds (VOCs), as mentioned in previous posts on the project, MEBO-Menssana Alveolar Breath Test project.

This does not mean that each participant will have to wait one year to receive his or her results, but it does mean that the scientific interpretation of the results from Dr. Phillips will be given at the end of the one-year long study.

Under the monitoring and review of one or more institutional review board (IRB), also known as an independent ethics committee (IEC) or ethical review board (ERB), MEBO Research will collect as many breath samples as funding permits from members of our international community who suffer from body odor and halitosis for a period of one year. These samples will then be shipped to Menssana, and after a year’s compilation of data is analyzed by Dr. Michael Phillips, M.D., he will write a scientific paper with his conclusions of the study, as he and his associates have done in the published studies noted below*, to name a few. This does not mean that each participant will have to wait one year to receive their results, but it does mean that the scientific interpretation of the results from Dr. Phillips will be given at the end of the one-year long study.

We at MEBO Research appreciate the very strong and supportive response we have received from our international community. Thank you.

María

*Menssana Research Publications

1. The IADR/AADR/CADR 83rd General Session (March 9-12, 2005), Prediction of Oral Malodor with Volatile Markers in the Breath.
2. Oral Diseases (2005); 11 (Suppl. 1): 32-34. Pilot study of a breath test for volatile organic compounds associated with oral malodor: evidence for the role of oxidative stress.
3. European Respiratory Journal (2004); 24: Suppl. 48, 467s. Volatile markers of pulmonary tuberculosis in the breath.
4. Workshop on TB and HIV Diagnostics in Adult and Pediatric Populations, sponsored by NIH and FDA, Silver Spring, MD (June 29, 2011)
5. Journal of Breath Research (Jan.22, 2010)Effect of influenza vaccination on oxidative sgtress products in breath.
6. Clinica Chimica International (CCA), the International Journal of clinical chemistry and Diagnostic Laboratory Medicine, CCA10989 (May 31, 2008)Detection of lung cancer using weighted digital analysis of breath biomarkers.
7. Journal of Clinical Oncology 2005; 23(16S): 839 S. Floor presentation at 2005 ASCO Annual Meeting, Orlando, Florida, May 16, 2005, Prediction of Lung Cancer Using Volatile Biomarkers in Breath.
8. IOPScience, (Mar. 2, 2010). The Institute of Physics (IOP) is a not-for-profit society that provides publications through which leading-edge scientific research is distributed worldwide. Volatile biomarkers in the breath of women with breast cancer.

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research