Re: Vitamin C study

[Guest guest]

Hi Ann,

Good to hear from you again. That study at Hopkins is part of a

larger study that is also going on at Wayne State and U of

Rochester. It is a 'double-blind' study, which means no one, not the

participant or the researchers know who gets the " C " and who gets a

placebo. This means you 'might get' the " C " or you " might not " . This

is pretty standard for trials. Visiting the hospital frequently is needed so

researchers can check on how you're doing, do tests, whatever, etc.

As for expenses, some trials do require participants to pay their

expenses; however, it doesn't hurt to plead your case and ask for help - who

knows? Since you received an " invitation " from Dr. Scherer, perhaps contact him,

say you'd like to participate, but the travel expenses are stopping you and is

there any help available for those who want to participate but for financial

reasons the travel expenses are stopping them.

" C " trials are certainly worth pursuing, as this is the 'first' real

treatment possibility to come along in 100 years for CMT 1A. Of course, the

decision is yours. Once you are in a trial, if, for some reason, you need to

drop out, you can. There are papers to sign no doubt with this on it. I am just

going on here based on my own experience in a drug trial years ago, which, due

to the ill effects of the medication I received, I ended my participation in the

trial.

But, IF I had CMT 1A and IF there was a West Coast trial, I would try it out.

But that is just me. But I have CMT 2, and there are NO West Coast trials, lol

Here's a link to the all the study info - the Hopkins email address for this is

at the bottom if you need to contact them.

http://www.charcot-marie-tooth.org/AA_Announce.php

I hope this information is helpful.

~ Gretchen

[Guest guest]

anne,

If vitamin C makes you sick why would you want to try it in the study?

8 times a day would be so hard to do.

[Guest guest]

anne,

I have found out that Strong Hospital in Rochester will help participants in its

Vit C trials with some money to cover travel expenses. It is not a lot, but

certainly will help.

Why not ask? All CMT experts realize what CMT does to earnings potential.

P.