Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

MEBO - UBIOME study 2018

NCT03582826
ClinicalTrials.gov
MEBO Gut Microbiome Study
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Ubiome Gut EXPLORER : 10% OFF
Join/Watch the weekly
TMAU UP Podcasts

Videos : TMAU stories

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

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.

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

Wednesday, August 29, 2018

MEBO's Mental Health Director - Interview with FOCUS, Netherlands

RAISING AWARENESS CAMPAIGN

The show will air on Dutch television on Wednesday September 19th. Herewith the link of the show: https://www.npostart.nl/focus/VPWON_1289481 the link is accessible internationally.
Our very own, Crissan Rosalia, MEBO Mental Health Director, Health Psychologist, MSc., has participated in a TMAU raising awareness short documentary in a scientific show in the Netherlands, FOCUS on NRT. NTR is a public broadcaster that makes special documentaries for targeted groups on nature, culture, health (especially misunderstood and misdiagnosed conditions), education, youth and diversity. Mr. Dirk de Bekker, Director NRT, was very moved by Crissan's portrayal of life with TMAU, and offered to do a short documentary with her, which she consented to.

...will be in Dutch without subtitles. However, the producer has promised to make a short compilation of the TMAU parts and they will provide this with English subtitles.
The show will air on Dutch television on Wednesday, September 19th. The link to the show is accessible internationally, https://www.npostart.nl/focus/VPWON_1289481, and although it will be in Dutch without subtitles, the producer has promised to make a short compilation of the TMAU part with English subtitles.

This short film, will also be made available to distribute online in order to raise awareness.
We are most grateful to Crissan for putting herself out there to raise awareness!

The following is Crissan's story of how this whole event came to fruition:

So a couple of weeks ago this was posted on Rareconnect and on Facebook:

Dutch film-maker seeks TMAU sufferer

Dirk de Bekker would like to contribute to raising awareness about Trimethylaminuria in The Netherlands, by making the story of someone dealing with TMAU in a very respectful way. Please contact the film-maker at the address below if you're interested: Dirk de Bekker Director NTR Dirk.de.bekker@ntr.nl 0031 6 28 14 27 53.

Dirk de Bekker is the producer of a scientific show in the Netherlands called Focus. This weekly show covers several topics which vary from nature, culture and health conditions (especially misunderstood and misdiagnosed conditions). The program is short, around 25 minutes but it is very informative.

Around the same time that the message was posted on Rareconncect and Facebook, the Dutch metabolic patient organization, VKS, arranged a meeting between me and this producer. After meeting mister De Bekker I have agreed to participate in this short documentary.

De Bekker has told me that he has received many emails from people all around the world who want to share their stories and contribute to the documentary (which is amazing :-). He was blown away and touched by the amount of people suffering from this condition and the difficult and isolated lives they lead. He was also saddened to hear about the the lack of acknowledgement and support from the medical community for this condition. He really wants to help raise awareness for this condition by making several documentaries.

In the future mister De Bekker hopes to produce a longer documentary solely on Trimethylaminuria, which is exciting. He also told me that he has been contacted by several international radio shows as well for interviews about Trimethylaminuria. So in the light of raising awareness for this condition, this is very promising.For the upcoming show they have interviewed a person with Anosmia (lack of functioning olfaction, the loss of a sense of smell) and a Trimethylaminuria sufferer (me) :-).

After a couple of interviews, August 27th was D-day, film day. Even though the show is only 25 minutes and they will cover many topics with regards to odor, filming took over 5 hours!!!! The presenter of the show seemed very moved by my story. The crew treated me well and they were very respectful and kind towards me. The shots will be edited and compiled shortly before the airing of the show (I haven't seen anything yet and also have to wait till the air date), so I'm very curious and excited about it. Hope they do a good job of portraying the core message of the story.

The show will air on Dutch television on Wednesday September 19th. Herewith the link of the show: https://www.npostart.nl/focus/VPWON_1289481

This link is also accessible internationally. Unfortunately the show will be in Dutch without subtitles. However, the producer has promised to make a short compilation of the TMAU parts and they will provide this with English subtitles. This short film, will also be made available to distribute online in order to raise awareness.

Even though this has been an emotional rollercoaster ( it feels like i'm bearing my soul to the world). I'm very happy to be able to do this and I also feel very strongly about the importance of "coming out" to raise awareness. I hope I did it justice and that I can encourage others to come forward and break the cycles of silence, shame and isolation. The more we can speak, share our stories, video's, articles and information on TMAU, the more awareness can be raised. In addition, I also hope that this will lead to more reasearch in the future, the discovery of a cure and the development of suitable treatment plans for TMAU and malodor patients.

Kind regards,

Crissan Rosalia

Crissan Rosalia
MEBO Mental Health Director,
Health psychologist, MSc.


A Public Charity
c.rosalia@meboresearch.org
takecharge@re-charge.org

In addition to raising awareness for our community, Crissan also write her Mental Health Monthly Column in this MEBO Blog. She is always available to sufferers in her very loving and compassionate way. We are so very appreciative and thankful to have you with us, Crissan! We are most blessed with you being among us as a fellow-sufferer and a true leader.


María


María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.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.

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment