UK Research for TMAU coming soon ...

malory · Post by **malory** » Fri Jun 21, 2013 11:14 am

Some hopeful research

The UK's Medical Research Council have agreed to fund some research which will hopefully culminate in the development of an effective therapeutic for TMAU. This news is of significance to ALL members of the malodour community because:

a) it shows that the UK medical establishments do respond to our concerns (such as our e-mail campaign on 19th July 2012) and are beginning to understand the extent and severity of malodour disorders. At last, malodour disorder is starting to be recognised as a potentially disabling condition which warrants being taken seriously. This will hopefully initiate a change in attitude not only within the UK health system but in other countries as well.

b) a therapeutic may be developed which could help some people suffering from TMAU. Our community also hopes that, eventually, this research and resultant therapeutic could possibly be useful for further investigations into helping non-TMAU odour sufferers.

Very soon, the Medical Research Council's official announcement of this £358k grant, and the specific details of the research to be undertaken, will be made available to the public via http://gtr.rcuk.ac.uk/

The project will incorporate the following research: Rats (male and female) will be similarly challenged to assess oral delivery of the therapeutic enzyme. Initially, we will assess route of delivery; therapeutic window of dosage; half-life of therapeutic; pharmacokinetics. A longer-term study, using GLP therapeutic, prepared to the standard for human clinical studies, will determine bioavailability, biodistribution, toxicity and pathology.

When the grant is officially announced, it would be a good idea for sufferers all around the word to let the MRC know of our appreciation with a mass e-mail campaign. This would also serve as another reminder that there are a great many of us odour sufferers out there, and that research will need to continue in order to ensure our needs are met.

Although we are grateful for the MRC grant, which will cover the initial stages of research, we anticipate that research will need to be much more extensive than the grant allows. For this reason, MEBO Research have a link on the MEBO blog to allow people to donate to this cause.

http://www.bloodbornebodyodorandhalitos ... l/Trinzyme

malory · Post by **malory** » Fri Jun 28, 2013 10:10 am

Very soon, the research funded by the UK's Medical Research Council will get underway. We have an amazing team of scientists working on our behalf. They will be led by Dr Liz Shephard of University College London, who, as you probably know, has selflessly supported our community for many years.

Now that the research is finally about to take off, we need to ensure that it is able to be continued, and a therapeutic delivered to all sufferers, even after the MRC grant comes to an end. For this reason, we need to raise funds for the prolongation of this project immediately.

There is already a link on the MEBO Blog for people to make donations via Paypal to the 'MEBO For Trinzyme Project' directly. If you are wondering why the project is named Trinzyme, it is simple: Trinzyme is a company founded in the UK by a researcher dedicated to developing a TMAU therapeutic. This company will participate in the MRC funded research, and then, hopefully, continue it. However, more funding is needed to ensure that the momentum is not lost and that the project progresses. It is our community's hope that the research commencing now will continue evolving and that our scientists can delve further into investigating odour conditions of all descriptions.

At this point in time, we need to share ideas for fundraising. Not every suffer will be able to donate to the Mebo For Trinzyme Project, but maybe every sufferer can contribute by spreading the word about this project and by forwarding the link to potential donors.
http://www.bloodbornebodyodorandhalitosis.com/

Mac · Post by **Mac** » Sat Jul 13, 2013 1:57 pm

This is great news. It shows that it's being taken more seriously and by talking about it we are all doing our bit to working towards helping people with odour problems. Slowly but surely. I know it's hard but stay positive.

Mac · Post by **Mac** » Sat Jul 13, 2013 1:59 pm

What was the email campaign? I joined after that. Is it worth doing something like that again?

malory · Post by **malory** » Sun Jul 21, 2013 7:24 pm

Absolutely, Mac. As soon as the grant becomes official, we will do another e-mail campaign of thanks/raising awareness to the MRC and the like.

There have been some queries regarding the fundraising to boost the MRC grant. I have spoken with the scientists involved in the research project and they would like you to know the following:

• A large organisation sponsor or company is needed to overcome the regulatory hurdles of the EMA and FDA etc. The company ‘Trinzyme’ will, therefore, ‘own’ the therapeutic and will need to recoup any money and effort put into the research project from any profit made. However, this said, Trinzyme has a very sincere interest in helping malodour sufferers and therefore, wants to market a therapeutic which is definitely affordable.
• Ironically, the less the patient investment, the more the company will have to attract investors (who may be motivated by profit alone and try to push the market price of the product higher), so it is in our own interests to raise as much money as possible to ensure that our community has control over the product and more access to it.

I know for a fact that the scientists working on this project are very committed and are working unsociable hours in order to maximise the time allocated to them for this research. We all need to stay positive, to encourage fundraising, and to support the scientists in this venture as much as we possibly can.

Post by **Jimi Stein** » Mon Jul 22, 2013 2:24 pm

Can you post some freaking ocuments, scans, that this funding is real?

Nothing is official till now and you are asking people for money?????

Do you think people will be able to raise 100000 for research?

POst some scans, ofiicial gov documents and then you can ask for money

malory · Post by **malory** » Wed Jul 24, 2013 2:21 pm

The funding is real, but wrapped up in bureaucracy which prevents it from being accessible yet on the link above.

Nobody needs to donate if they aren't comfortable with it or can't afford it. I already have donated and hope to donate more. That's my choice.

Most importantly, the decision to give odour sufferers a grant is a huge POSITIVE step and should give each of us some hope that our conditions are beginning to be taken seriously. Progress is being made and we have to stay positive to make it happen faster and to continue further.

malory · Post by **malory** » Sun Nov 24, 2013 4:02 pm

This link was sent to me by an official from the MRC. The grant is officially announced.

http://gtr.rcuk.ac.uk/project/772B5BB8- ... BC7F8369DF

So far, nearly £1000 has been raised on the MEBO site

malory · Post by **malory** » Thu Dec 12, 2013 11:24 am

It would be a good gesture if people from our community e-mailed the MRC to express our thanks for the TMA research grant. This would still be a raising awareness campaign and an excellent follow-up to the original campaign requesting the grant.

Contact e-mails are:

[email protected]

[email protected]