Hi

That is right I have often met up with the scientist42 and sometimes he has asked me to phone round everybody to arrange a meeting. Sometimes it's tiring doing this as some people can't come or say they are coming but don't bother etc. We did meet one summer with TMAU experts. Generally once you are put in touch with everyone on an email round you can arrange any meet up yourself with people in the same area, depending on job or family commitments etc.

I was not in London this weekend so couldn't meet up after all. I am not often in the U.K. I will call the scientist tonight and ask him to contact you on here. Then you can take it from there. I found it very helpful to meet up with people and just be able to have a chat on the phone when things get you down. Everyone has such similar experiences and frustrations. Good luck and hope you also find something that helps.

Sorry about the slow reply. Academics present included Prof Shephard (University of London) and her husband. There was also another academic but I can't remember his name. They talked with many of us and examined test results for those people who had been tested for Trimethylaminuria. One or two of us had also got other tests done such as blood/urine organic acid and amino acid profiles.

No other important contacts were made although the people who got tested had mentioned that they were tested by Dr Lee (London) and Dr Manning (Sheffield Royal Infirmary). No further investigations came out of the meeting.

The academics suggested we try to raise money for research by, for instance, contacting grant bodies and private funding sources. I can't remember which ones we tried but we had no luck as these are rare disorders and Pharmaceutical companies do not see a good market for such rare conditions.