Follow-up to Research at Mayo Clinic, Rochester, Minnesota

[Lake of the Woods]

I wanted to let you all know that I followed up my telephone conversation with the Dr. from the Mayo Clinic with a letter. In it I advised him that I am keeping you all informed as to what I know on this - through the website. I told him on the phone about the website as he was unaware of it and I mentioned it again in the letter - he said he would "check it out".

I mentioned that if they needed more OT patients for studies we could post something on the website asking people to come forward. I also asked him if it would be helpful if we starting thinking about compiling data on past history, illnesses or is that too premature?

I also asked if it would be helpful if I came back to the Clinic. I realized after I got home and started reading on the website and learning about this disease, that I was diagnosed "quite early" compared to most people. I told him that if he wanted me to come back for more testing I would figure out something as I was aware that funding from them for travelling would not be available. I am also letting you know in this regards I would not be looking for travel aid from any of you - save your money in case it is needed for research.

I did get a reply to my posting, commenting on the dollar amount for their research - I agree it is pitance. That was why I asked about funding - I didn't want him to say "we had to quit the research because of lack of funding". Luckily he didn't say that.

I just wanted everyone to be aware of the "funding" - we should be thinking about that in case the day comes when they might need it.

I don't know anything else I can do in this regards - I will keep you informed on what is happening.

[stella]

HI
Very pleased to hear of a possibility of some research to get going
at the Mayo clinic.
We all seems to be in a bit of a rut with this disease. Nothing happening
in the medical field about it.
I saw my neurogolist last week and i just get my percription refiled.
Didnt get tested since my first diagnosas a year ago.

Thank you KEnora, for following up on this for us all. Maybe there is something more we can all be doing
candyse