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: 30 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 : 5

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 30-AUG-2014:
£ 848.03/GBP
$ 513.00/USD

TOTAL at today's ROE
£0.60/GBP = $1.00/USD

£1,157.08 = $1,920.69

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: $267.48 = £159.47 (30AUG14)
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


Monday, September 1, 2014

Writing testimonials in the RE(ACT) TMAU group

RE(ACT) Crowdfunding site especially for rare disorders including TMAU

Link to RE(ACT) TMAU group

RE(ACT) is a Swiss charity, part of the BlackSwan Foundation. It is a recently started website intended to allow rare disorders to raise funding for projects. In particular it wants to attract researchers to put forward projects which the public may then donate to. So far only one project has been put forward on the whole website and that only went live about 1 month ago. (pilot study for CMN disorder)

About posting in the RE(ACT) TMAU group
Sufferers can interact with researchers on the RE(ACT) website by posting their 'experiences' of their condition. This is the same concept as writing a 'testimonial' on the Rare Connect TMAU group page.

RE(ACT states about the idea behind the 'experience' pages :

  I am a patient and I want to meet other patients, is the RE(ACT) Community a Patient Network?
• Our community is principally addressed to researchers and to patients and/patients organization which are actively implicated in research projects. If you want to meet patients and share your experience we suggest you to use the Eurordis' RareConnect platform. The RE(ACT) Community encourages patients to share their knowledge and experiences on treatments or to provide other scientific observations  to researchers in order to give them a better understanding of the disease and help them in finding new treatments.
Link

Donating to the RE(ACT) TMAU group
People can donate to the RE(ACT) TMAU group via paypal, either by being signed in or donating anonymously. 10% of the donation goes towards RE(ACT) admin costs. Perhaps over time this fee will drop. Any money given to the TMAU group will be kept in the general TMAU fund until a project is approved which will then be given any accrued money.

Signing up to the RE(ACT) TMAU group
Many people have said they have not been able to sign up to the RE(ACT) TMAU group. It seems that quite often the clarification email is in the spam folder, although sometimes does not arrive at all. RE(ACT) is in beta mode, and hopefully the bugs will eventually be ironed out.

Thursday, August 28, 2014

Another TMAU ebook on Amazon : A Girl's Guide to Managing TMAU

New TMAU book available on Amazon (published April 2014)
A Girl's Guide to Managing TMAU: My Personal Experiences, Diet and Solutions
by Katie Turner
Price : $2.98

It has been noticed that another ebook about Trimethylaminuria by as TMAU 'sufferer' is available on Amazon, published on Amazon on April 2014. This seems to be the 3rd personal TMAU ebook on Amazon. The other 2 books are listed below in the list.

About becoming on author on Amazon
Anyone can be an author on Amazon. As well as raising awareness of TMAU it could also be a possible way to generate some passive income, possibly from 35% to 70% of the purchase (minus any other costs). It seems that Amazon also take a cost per mb of size of the ebook, so using images apart from the cover are suggested, as images are so big in data size and text is not. Of course the book does not have to be about TMAU, as Karen James has shown by publishing her own fiction ebook on Amazon recently.

If you buy the ebook through the links in this post or via the Amazon links in the sidebar, MEBO will get a small % of the purchase at no extra cost to the buyer or to the author.

Links
Amazon USA
Katie Turner TMAU ebook 
list of TMAU personal ebooks 

Amazon USA : The Tourmaline by Karen E James
Amazon UK : The Tourmaline by Karen E James

Wednesday, August 27, 2014

Meetup Myrtle Beach, South Carolina


Get together with us
at Myrtle Beach - Broadway
@ The Beach

on Sept 6 and 7th!

Hampton Inn, Myrtle Beach - Broadway @ The Beach
1140 Celebrity Circle
Myrtle Beach, SC 29577
843-916-0600





Questions: email glenna.gonzalez@yahoo.com








A EURORDIS and NORD Member Organization