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 performed in batches of 15 to 20

DATE: 23 APR 2015
Now on : Batch #15
Samples analyzed since June 2012 : 269
Samples sold for Batch#15 : 10
Current samples received for Batch#15 : 4

Test analysis performed in batches of 15 to 20

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 17-DEC-2014:
£ 863.03/GBP
$ 563.00/USD

TOTAL at today's ROE
£0.64/GBP = $1.00/USD

£1,224.17 = $1,908.44

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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Wednesday, April 22, 2015

RDPF! webinar : 23rd April : Dr John Whyte

Announcement

Webinar 23rd April 8am PST
organised by Rare Diseases Patients First !
For details contact Dr. Speid at lspeid@sndtm.com with RDPF! In the subject line

Free online seminar about the Drug Development Process for Patients
with Rare Diseases. Please share widely with friends and family
“The Rare Diseases Patient at the Center of it All”

You are cordially invited to a free WEBEX (seminar). This seminar is being organized by Rare Diseases Patients First! a non-profit that provides unbiased information to patients with rare diseases, and parents with children that have rare diseases. Our goal is to provide information that will empower you to make a difference in the drug development and clinical trial processes for rare diseases.

Patients with rare diseases are very busy. This is one hour that will be an effective use of your time.
Date: 23rd April 2015
Time: 8 am PST (US West Coast); 11 am EST (New York Time); 4 pm Local Time in the United Kingdom; 5 pm Local Time in Europe
Duration: 1 hour
Special Guest Speaker: Dr. John Whyte, Director, Professional Affairs & Stakeholder Engagement, U.S. Food and Drug Administration
“Patients are experts in their disease, and we need to include their input.”
- Dr. John Whyte

Format: A presentation will be followed by an interactive question and answer session. This is your opportunity to have your Questions about patient engagement answered. Not everyone can travel to Washington DC for the special patient engagement meetings that FDA holds. This is your opportunity to tell us about your concerns.

How can I register for this Webinar? Please email Dr. Speid at lspeid@sndtm.com with RDPF! In the subject line. She will send you the WEBEX login information.

What will it cost to take part? This Webinar is absolutely FREE. However, because space is limited, please make best efforts to take part if you register. We will not be making recordings available at this time.

RDPF! Website: The website will be activated after the trademark (in process) is approved.
RDPF! Facebook page
RDPF! Twitter
Linkedin page
RDPF! BLOG
Free online seminar about the Drug Development Process for Patients
with Rare Diseases. Please share widely with friends and family

Bio for Dr. John Whyte, Special Guest Speaker
JOHN J. WHYTE, MD, MPH
Director, Professional Affairs & Stakeholder Engagement
U.S. Food and Drug Administration

John J. Whyte, MD, MPH is currently the Director of Professional Affairs and Stakeholder Engagement at the Center for Drugs Evaluation and Research at the US Food and Drug Administration. In this role, Dr. Whyte works with health care professionals, patients, patient advocates, and others involved in the use of medicines. His office provides them with a focal point for advocacy, enhanced two-way communication, and collaboration, and assists them in navigating the FDA on issues concerning drug development, review, and drug safety. He also oversees the Safe Use program and supports the ongoing partnerships and activities under the Safe Use Initiative.
Previously, Dr. Whyte served as the Chief Medical Expert and Vice President, Health and Medical Education at Discovery Channel, the leading non-fiction television network. In this role, Dr. Whyte developed, designed and delivered educational programming that appeals to both a medical and lay audience. This included television shows as well as online content.

Dr. Whyte is a board-certified internist. He completed an internal medicine residency at Duke University Medical Center as well as earned a Masters of Public Health (MPH) in Health Policy and Management at Harvard University School of Public Health. Prior to arriving in Washington, Dr. Whyte was a health services research fellow at Stanford and attending physician in the Department of Medicine. He has written extensively in the medical and lay press on health policy issues. His book Is This Normal? The Essential Guide to Middle Age and Beyond has won numerous awards. His most recent book, AARP New American Diet: Lose Weight, Live Longer is a national best-seller.

Background
Patients with rare diseases need unbiased and accurate information about their rare diseases, how to manage it on a day to day basis, and the best treatments that are available to them. Many also want to be consulted about how their disease affects them on a day to day basis, so that this input may translate into better new treatments.

Patient engagement in the drug development process is a rapidly developing field. It is particularly important in the area of rare diseases because the number of patients with a rare disease is limited. This requires drug developers to gather the most appropriate data during the clinical trials. In order to do this, they must have a clear understanding of what is important to the patients with the rare disease that they are developing the new treatment for. No one knows a rare disease better than the patient that is living with it. RDPF! Website: The website will be activated after the trademark (in process) is approved.

We will be exploring patient engagement in relation to the regulatory framework.
• What does patient engagement look like?
• What regulatory framework is the FDA putting in place for patient engagement?
• How will FDA protect the patient as pharmaceutical firms seek to engage with them?
• How can conflicts of interest be adequately addressed?
• Will there be a need to reassess the risk versus benefit paradigm as patients with rare diseases provide their input?
• Are patients going to be able to access experimental treatments even before they are approved?
• What do parents of children with rare diseases need to know about the availability of experimental and unapproved treatments for compassionate use?
• What are surrogate endpoints and how can patients help to clearly define them for drug developers?
Sponsors for Webinar 003

“The Rare Diseases Patient at the Center of it All”
We are thankful to the Sponsors of Webinar 003 for helping us to spread the word to patients and parents of children with rare diseases.
Rare Diseases Patients First! is an organization that seeks to provide free and unbiased educational content about the drug development process to patients with rare diseases, and parents of sick children with rare diseases. RDPF! Website: The website will be activated after the trademark (in process) is approved.

To Register: Please email Dr. Speid at lspeid@sndtm.com with RDPF! In the subject line. She will send you the WEBEX login information.
Cost: FREE – This is free, but space is limited. If you take a space, please make best efforts to take part. We will not be making recordings available at this time. RDPF! Website: The website will be activated after the trademark (in process) is approved.

Monday, April 6, 2015

Be a participant of the MEBO Annual Meetup wherever you live

See Embassy Suites Orlando pics
Memphis Meetup/Conf 2013
Washington DC Meetup/Conf 2011
Miami Beach Meetup/Conf 2012
As I have mentioned in previous posts, this year's meetup and conference will be more informal, since some of our scientists are involved in research, designing research, and/or the pursuit of research funding. We have received so much information from our experts for so many years, and many presentations have been shown at previous MEBO Annual Meetups and Conferences, that we really should re-visit them and discuss them to better understand them and incorporate them in our lives.

The main focus for this year's meetup is to re-open and discuss much of the information presented in previous conferences, with a great deal of emphasis on our whole international community's participation. Group participation is strongly encouraged. Unfortunately, since our community is spread out around the world, not everyone can attend the meetup and conference, so therefore, I really hope that each of you send me information that has been most helpful to you, whether it is a professional paper, handouts from our experts, excerpts from an interview of an expert or a webinar, an article, powerpoint presentation, the MEBO Raising Awareness Campaign, or a post in the MEBO Blog, etc. I will try to incorporate the information you provide in our group discussions.

MEBO Annual Meetups & Conference
Scroll down on link to see all posts
At this time, the primary topics to be discussed are,

After the meetup, I will be posting about it in this blog so that those who could not attend can get some information about what was said, and the more people that participate in sending me information, the more we will all benefit in the long run. If you have something that has been particularly helpful to you in your efforts to understand your condition and how to best control it, please share it with me in an email at maria.delatorre@meboresearch.org, or give us the link in a Comment on this post.

Be a participant of the MEBO Annual Meetup/Conference in Orlando 2015, NO MATTER WHAT PART OF THE WORLD YOU LIVE IN! We are one community, and unfortunately, there is no way we can hold a meetup that every sufferer around the world could attend. Geographic locations and language barriers are a significant obstacle that prevents us all from uniting physically, but thankfully, we can do so online through the MEBO sites.

Thanking everyone in advance,

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


Please use your credit card to make your donation.

A EURORDIS and NORD Member Organization 

Friday, March 20, 2015

The MEBO Website New Look

Click on icon

I am most grateful to the MEBO User Experience and Technology Director, Jason, for donating his expertise in the revamping of the MEBO website to give it a beautiful, clean, and modern new look! We now have a new and upgraded form, structure, and appearance to our website.
Biotech Therapy Research

Using Jason's words, he tells us, "The main reasons I did it are to work with the new social sharing tech, make it more readable on mobile, and bring up its Google score. Also it now has Wordpress so it'll be so much easier to update, you can make a page within minutes." What a great asset Jason and his work are for our cause.

Jason took the initiative of offering to volunteer his services yet again, as he has done through the years. It is through his dedication and expertise that MEBO has been successful in "spreading the word" around the world. His technical support in all of MEBO's Annual Conferences has been invaluable to our community. We thank you, Jason!

Investors Sought
María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


Please use your credit card to make your donation.

A EURORDIS and NORD Member Organization