Fundraising Committee needed to boost MRC grant

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Fundraising Committee needed to boost MRC grant

Postby malory » Fri Jun 28, 2013 10:04 am

http://www.bloodbornebodyodorandhalitosis.com/

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.

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.

If you would like to offer your ideas or would like to be part of a fundraising committee, please let me know, or share your ideas on the forum.
malory
 
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Re: Fundraising Committee needed to boost MRC grant

Postby malory » Thu Jul 04, 2013 3:40 pm

Ok, so I haven't been overwhelmed with replies, and I know MEBO have not been inundated with donations, BUT, even if you can't donate directly, please make any purchases on Amazon via the MEBO blog. It raises money. Please tell others about the fundraising too!
My birthday is this weekend - my best present would be to see our community supporting this fundraising drive :P
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Re: Fundraising Committee needed to boost MRC grant

Postby Veronica » Sat Jul 06, 2013 5:51 am

Sounds promising, and I thank you for the work you're putting in, but is anyone else thinking about what this therapeutic, a drug most likely, would cost? Massively, beacuse pharmaceutical companies are all about profit and they know we're desperate...a drug would be out there on the market, but you couldn't afford it. I don't think this sceanrio is far-fetched at all, but must not bring people's spirits down so I'll just shut up.
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Re: Fundraising Committee needed to boost MRC grant

Postby malory » Sun Jul 21, 2013 7:03 pm

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.

ps. thank you to those people who donated over my birthday weekend! :D
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Re: Fundraising Committee needed to boost MRC grant

Postby mpdela » Mon Jul 22, 2013 6:09 am

I haven't written in this forum for quite some time simply because I've been so busy working on MEBO projects, but MEBO has always supported the work BigVern has done in this site, as we've had a link to this forum in MEBO's blog main menubar for years now. Our whole international community wholeheartedly appreciate the work done by Bigvern in this Board, which he founded in 2009. Not only has he done interviews with Dr. Lachmann, Nigel Manning, and Dr. Colin Dolphin posted in this forum, but he himself has also done a great interview giving his personal testimony of life with TMAU in an audio program for the public service website, 'theworld.org,' http://www.theworld.org/2012/03/tmau-genes/, in which Drs. Elizabeth Shephard and Ian Phillips are featured as well.

The two UK online sites representing the TMAU community are this forum, the TMAU.org.uk site, and MEBO, registered in England and Wales, as we have always directed all our efforts to pursue research and support for TMAU research with the leadership and guidance of our experts. Therefore, I wholeheartedly support the new £358,000 MRC grant funded research into a therapy for the body and breath malodour disorder, Trimethylaminuria (TMAU), with Dr. Elizabeth Shephard as the Principal Investigator. If all sufferers around the world unite with our body odor and halitosis organizations in the UK to promote this therapeutic, we can hope to achieve keeping the cost of this therapeutic down so that sufferers will have access to it in the future in order for each to be able to live a normal, odor-free lifestyle.

After all the years of selfless support and guidance we have received from Dr. Elizabeth Shephard in this Forum and in the MEBO events and websites, without her receiving any compensation for her work from our community throughout the years, all sufferers around the world should trust her blindly in her leadership efforts in this research. Dr. Shephard would never have allowed her name to be associated with a dubious project that may exploit sufferers, yet she is in the forefront of this research as the PI. Dr. Shephard's distinguished reputation precedes her, and I encourage our whole international community to support her efforts to research for us.

A scientist involved in her research has registered the company Trinzyme with the Companies House in England and Wales in order to fundraise to support this much needed research project that can change so many lives. Dr. Shephard has allowed and supported the creation of Trinzyme as the entity to fundraise for the support her research in an effort to keep cost down for us sufferers once the therapeutic goes out on the market. If you think about it, Dr. Shephard will not personally benefit more from getting funding from sufferers as opposed to private investors because one way or another, she would receive the funds either ways. The scientists in this project are dedicated to us sufferers, to helping us have access to an affordable therapeutic that will change our lives forever. If Dr. Shephard supports Trinzyme as the entity to fundraise for her research, then all sufferers around the world should trust and support it. Any donations given for this represents less funding required from profit-seeking benefactors, who will serve only to increase the cost to sufferers for the therapeutic .

Veronica, your concerns are very valid. I don't see your opinion as pessimistic, but rather as a very valid, yet potentially manageable reality - indeed we currently have the wherewithal to control our future, and now more than ever before! Our whole international community needs to arrive at the realization that it is better to donate for this research now than to have to pay a very high price for the rest of our lives for the use of this therapeutic once it goes out in the market. Please encourage everyone to donate now so that we won't have to ask investors to seek profits at our expense. How wonderful it will be for sufferers to be able to someday eat our currently "forbidden foods" and to not have to bathe many times a day in vain, while still remaining socially active and successful in our schools, jobs, family life, and intimate relationships - and to be able to do so in an affordable manner! Let's pave the way NOW for the rest of our lives and that of our offspring!


María de la Torre
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Re: Fundraising Committee needed to boost MRC grant

Postby malory » Mon Jul 29, 2013 6:32 pm

Wow! nearly 2000 views for this post.
If each viewer only gave 5 quid, we would have some funds for research :D
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Re: Fundraising Committee needed to boost MRC grant

Postby malory » Sun Aug 04, 2013 6:20 pm

Thanks to everyone who has already donated to the Trinzyme Research Project! We have already raised £300 and that's before the MRC grant has even been officially announced.
http://www.bloodbornebodyodorandhalitos ... uncil.html

Please also remember to use the Amazon link on the MEBO blog page to help raise funds when you're doing online shopping!
malory
 
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Re: Fundraising Committee needed to boost MRC grant

Postby malory » Sun Nov 24, 2013 4:10 pm

We have already raised nearly £1000. Now the grant has been officially announced, we should be able to raise more:

http://gtr.rcuk.ac.uk/project/772B5BB8- ... BC7F8369DF
malory
 
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Re: Fundraising Committee needed to boost MRC grant

Postby malory » Thu Dec 12, 2013 11:16 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:

linda.willmott@headoffice.mrc.ac.uk

corporate@headoffice.mrc.ac.uk
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