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

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 TMAU Testing Program (Scroll down to see all posts)
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(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

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A EURORDIS and NORD Member Organization