MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

TMAU Test through MEBO Research

MEBO Research International
TMAU Urine Test

SEE UPDATES HERE
$150 plus
shipping costs

for one test,

$250plus
shipping costs

for 2 tests over time.
TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please..
(supplied with test-kit)

TMAU Test
Results Form

sent via email

For Questions and Answers, see

MEBO's Interactive
Q & A Forum

Test analysis will normally occur in batches of 15 to 20

DATE: 27 AUG 2014
Batch #11 shipped to lab: 5AUG14 (15 samples)
Now on : Batch #12
Samples analyzed since June 2012 : 208
Samples sold for Batch#12 not returned to MEBO : 10
Current samples received for Batch#12 : 4

Will send 15 to 20 samples to the lab for Batch#11.

Sonya's TMAU diet book

One of our group, Sonya McClinton, has written a 'low choline' recipe book. If you buy from Amazon through these links MEBO get a small % at no extra cost to the buyer


Amazon USA
38 sold

Amazon UK
14 sold
Don't have a kindle ? There are details on the right-side of the amazon pages how to download an app for smartphones, PC, or tablet. For Spain/Canada use the Amazon links in the left sidebar

tell others: send these links
Amazon USA : http://goo.gl/iisvYR
Amazon UK : http://goo.gl/mH2ZyN
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 8-AUG-2014:
£ 843.03/GBP
$ 513.00/USD

TOTAL at today's ROE
£1,148.27 = $1,929.84

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

Upcoming get-togethers

TMAU support group in Ormond Beach, Florida
contact Hilda at hpostell@rocketmail.com

Let us know if you want a meetup listed

Skype Group

International Skype group

Join through skype : username "Jo Jo"
members so far : 71
download skype (free version)
create a free account
Search for skunkhugsj : Make him a contact
Or ask anyone in the group to add you to group

Bi-Weekly Group Calls

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefixGeneral Conferences: normally every other Sunday starting at 2:00pm - 4:30pm Eastern Time.

Note: can also be used anytime for unscheduled group chats

Free USA-based phone conferences (if you have a long distance call plan. Otherwise you will be charged as a long-distance call)

For USA-based : (712) 432 1620 then type the access code on your phone keypad: 391629#
Non USA : prefix above with 001 but check to see if it is free with your supplier

Record number of callers : 70+
If privacy is a concern, code your phone to PRIVATE mode
This phone line can be used anytime to talk to other sufferers
You don't need to talk. You can just listen

MEBO Community Outreach Program

Click here, Scroll down, Click on
"This belongs on CNN"
Cheryl Fields, Ph.D. (ABD)
MEBO Community
Outreach Director
Book uplifting seminars for free.

Click here for details and scroll downHome/Voicemail (785)-286-7005
email: cheryl.fields@meboresearch.org


Cheryl's CNN campaign

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Diaspora

TOTAL DONATIONS: $262.50 = £156.47 (18AUG14)
1st shipment to Kenya 3JUN14 $92.75/USD
2nd shipment to Ghana 15AUG14 $104.56/USD
SUPPLEMENTS FOR AFRICA DRIVE


MEBO US PAYPAL ACCOUNT


MEBO UK PAYPAL ACCOUNT


Wednesday, February 29, 2012

Take action to Raise Awareness today, Rare Disease Day!

Please click on this link
See examples below of emails written today.
Please feel free to copy and paste excerpts to create your own.


TODAY IS THE DAY TO TAKE ACTION
AS A UNITED COMMUNITY!

As mentioned in previous posts, our international community at MEBO Research and all sufferers from around the world have been "called to arms" to prepare to join the National Organization for Rare Disorders (NORD) and Eurordis in important advocacy initiatives organized for the Rare Disease Day, today, February 29, 2012. MEBO urges sufferers to take a moment to participate in the two mass email/mail campaigns aimed at the authorities in the US and UK that could be most influential in assisting us in our quest to initiate research and find a cure.

**You may include a link to the TMAU paper written by Dr. Elizabeth Shephard for MEBO Research, http://www.meboresearch.org/Trimethylaminuria%20Paper%20by%20Dr.%20Elizabeth%20Shephard.pdf **

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED STATES:
"In solidarity with EURORDIS and NORD""

By following the easy steps in this virtual tool, you can let your elected officials know that rare diseases are important to you! NORD has provided a sample letter for you, ready-to-go, though we certainly encourage you to take an extra moment to personalize your message and make it resonate.

Once you complete this action alert, your message will be instantly and electronically sent, though you have the option to print and mail your message if you prefer. You may choose to send your message to:
- The President and Vice President of the United States
- The two Senators who represent you in the US Senate
- The Congressperson who represents you in the US House of Representatives
- Your State's Governor and Lt. Governor
- Your representatives in your state's legislature


CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED KINGDOM:
This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

"In solidarity with EURORDIS and NORD"

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.bloodbornebodyodorandhalitosis.com/2011/06/raising-awareness-and-research-funding.html

UK Contacts


Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Media
thismorning@itv.com


Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk


Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

USA Infectious Diseases Division Office, Northwestern University
gnoskin@northwestern.edu
Gary A. Noskin, MD Professor, Medicine, Infectious Disease Division at Northwestern University.



This is an example of the email I sent Dr. Gary Noskin. Please feel free to copy and paste:

Dear Dr. Noskin,

"In solidarity with EURORDIS and NORD"

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We are contacting you requesting help with raising awareness of Trimethylaminuria (TMAU) and other difficult to control body and breath odor conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.bloodbornebodyodorandhalitosis.com/2011/06/raising-awareness-and-research-funding.html

your support in this matter is greatly appreciated.

Regards,


Here are other examples of emails. Please feel free to copy and paste and adding your own wording, mixing these up to create your own version.

Hello,

I am a patient, and someone that suffers from a disorder that manifests into body odor symptoms. On Rare Disease Day, I wanted to send you an email so that you can raise awareness with General Practioners. On numerous occasions, I have visited with someone for medical help and attention, but only receiving disbelief and humiliation.

Diseases such as:

· Trimethylaminuria

· Isovaleric acidemia

· Maple syrup urine disease

Any many more do EXIST. You may have received emails from patients around the world suffering from these disabling diseases. Any little bit of help from you today and this year simply by letting others know of these disease so that patients can be tested and well informed would be life changing for patients.

You are the lifeline for patients so I beg you to make a difference.

Thank You


Dear Senator____________:

I am writing to alert you to an issue that has a daily impact on nearly 1
in 10 Americans. Nearly 30 million men, women, and children in the U.S.
have rare diseases. All of us know someone with a rare disease. Many
rare diseases are serious and/or chronic. Many are life-threatening.
Even so, people with rare diseases often have trouble accessing the
medical or other services they need.

Today - February 29 - millions of people around the world are observing
Rare Disease Day with events and activities to focus attention on rare
diseases as a public health issue. In the U.S., more than 650 patient
organizations, government agencies, educational institutions, and
pharmaceutical/biotechnology companies have signed on as Rare Disease Day
Partners with the National Organization for Rare Disorders, the US sponsor
of the day.

In the U.S., a disease is considered rare if it affects fewer than 200,000
people. Some rare diseases such as Lou Gehrig's disease (ALS),
hemophilia, and sickle cell anemia, are well known to the public. Most are
not. You can imagine the loneliness of having a disease that most people
have never heard of, even many medical professionals. Additionally, there
are many rare diseases that medical researchers are not actively pursuing.

Most rare diseases still have no treatment. Of the nearly 7,000
identified by the National Institutes of Health, only about 200 rare
diseases have FDA-approved treatments. Individuals and families affected
by rare diseases feel alone and forgotten by our nation's healthcare
system, and often have to fight their own battles to obtain needed
treatment and services.

As a voter, I want you to know about the most pressing policy goals of
patients and families living with rare diseases. These include:

- fostering a culture of innovation that supports both the basic and
translational research necessary to create diagnostic tests and therapies
for all rare disorders

- expanding access to life-saving treatments that are already available in
the marketplace

- ensuring that the NIH & FDA have the resources needed to promote medical
innovation and protect the health and safety of the American public

- protecting insurance reforms, such as the elimination of annual and
lifetime benefits caps as well as the elimination of all policies that
would use a person's medical history or 'pre-existing conditions' to
determine access to care

- achieving coverage parity of treatments for all rare disorders
consistent with coverage standards for all life-saving treatments

I am a patient, and someone that suffers from a disorder that manifests
into body odor symptoms. On Rare Disease Day, I wanted to send you an
email so that you can raise awareness with General Practioners. On
numerous occasions, I have visited with someone for medical help and
attention, but only receiving disbelief and humilation.

Diseases such as:

• Trimethylaminuria
• Isovaleric acidemia
• Maple syrup urine disease

Any many more do EXIST. You may have received emails from patients around
the world suffering from these disabling diseases. Any little bit of help
from you today and this year simply by letting others know of these
disease so that patients can be tested and well informed would be life
changing for patients.

You are the lifeline for patients so I beg you to make a difference.

On behalf of the rare disease community in the United States, I thank you
for your attention and consideration.

Please make every effort to improve the lives of all people with rare
diseases.

Sincerely,


Thank you for your support! As in the past, when we organize and take action as an organized international community, people take notice. Please be a part of this.

María

halitosis research
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

body odor petition
MEBO Research

1 comments:

Anonymous said...

Please also include

gnoskin@northwestern.edu.

THANK YOU

February 29, 2012 at 10:52 AM
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