The RE(ACT) platform : A TMAU researcher will join soon and submit a research proposal

News about the RE(ACT) crowdfunding platform for rare disease researchers

Click for RE(ACT) TMAU group

It seems that a researcher with a long interest in TMAU (trimethylaminuria) research is very interested in making use of the RE(ACT) platform to put a TMAU research proposal forward for consideration. The RE(ACT) scientific committee will then consider the proposal which could take about 3-5 weeks, and then if approved it will be put on the RE(ACT) TMAU page for funding. The researcher is expected to join the RE(ACT) TMAU group and perhaps submit the proposal very soon, perhaps over this weekend. The researchers name will appear on this page when they join RE(ACT) :

RE(ACT) list of researchers for TMAU group 

RE(ACT) TMAU group

The researcher is not 'Olivier M', who is Dr Olivier Menzel, the founder of RE(ACT) and The BlackSwan Foundation.

Estimated cost of  research proposal
Our understanding is that  originally the provisional cost of the scaled back project was estimated at around $65 000, but it seems the project will now be a 'full scale' project possibly to take over 3 years and may be estimated to cost around $484 000. The researcher understands that since the project is an 'initial stage' project, that it may not be approved by the scientific committee.

About donations made to the RE(ACT) TMAU fund  
The RE(ACT) platform is a very new venture, but it seems there are 'contingency plans' in place when dealing with donations. From reading the site and some email inquiries it seems (to be confirmed, please check) :

RE(ACT) and BlackSwan Foundation is a Swiss charity
There's a 10% admin fee on any donation
Donations are via paypal
Donations can be made without signing up to RE(ACT)
Each disorder will have a general fund and a fund for any project
Anything in the general TMAU fund will be given to a TMAU project
If for example funding 'dries up' for a project, the donations may be put back into the TMAU general fund
Any money in the TMAU general fund will not end up in the RE(ACT) upkeep fund
Research proposals from worldwide are welcome

RE(ACT) is a very new and exciting initiative, but let's hope that probably the main concern is clarified by them as they learn over time, that all money donated to the TMAU group should stay within that group (currently the understanding is that this is the case).

New opportunity for TMAU research and for sufferers unlock money available in the community for our future
So we are very fortunate to learn of the new exciting platform that is RE(ACT), and also are fortunate that a TMAU researcher will be one of the first to submit a proposal to the platform on our behalf. Currently there is only one project on the whole RE(ACT) website, which was only approved in the last 2 weeks. Let's hope it is the first of many TMAU research projects (all research projects are welcome), with hopefully (as currently understood) all the donations staying in the TMAU group no matter what.

It would seem that RE(ACT) may become a main focus point for all rare disorders neglected by the health system.