European Vitamin C, USA background, Dr. Vinci

[Guest guest]

Helen,

If you are already taking Vitamin C, you most likely won't be

included in the trials. That was a condition set a long time ago.

Secondly, I believe participants will be selected from the North

American CMT database, so check into this and if you really plan to

try to participate, sign up.

Thirdly, the original mouse study of Vitamin C/Ascorbic Acid came

out in April 2004. This is in our Files section. Following this news,

French reps came to the USA with their research, and at that time,

the USA CMT docs meeting with them decided that the Vit. C issue was

not for them or their CMT patients. There has been a $5 million proposal on the

table in the US for Vitamin C and CMT research ever since that isn't fully

funded. Not exactly " committment " .

Go back to April 2004 archives and read forward all the Vitamin C

posts in . You will see how independent thinkers with CMT have

experienced life with Vitamin C and hear about their success.

Meanwhile, the study on young people in the Netherlands began earlier

this year, as did the French one and the Italian one. As Donna has

mentioned, the one in the UK is awaiting funding also.

Meanwhile, the European countries got on the ball, so to speak, as

they are far more progressive in experimental medicine and research

than the US and they have far fewer 'issues' with govermental

approval. Take a look sometime at the Euro Stem Cell research, also,

we first hear of the Onapristone studies from Germany for CMT 1A, and

also Myostatin which helps skeletal muscle and is in pre-clinical

trials. The first RNA news came out of Europe also.

Dr. Vinci is a world reknown CMT doctor. He himself has CMT Type 2.

He has done far more than most US docs will ever do to advance

awareness of CMT, plus HELPING CMT persons understand their

syndrome. You might want to get Dr. Vinci's book " Rehabilitation Management of

CMT " . It will explain a great deal, discusses the various stages, has photos,

etc. You can contact the AICMT to inquire about it. The book is written in

English. I think it requires a membership to the AICMT, but then the book is

free. Or you can try to get it through inter-library loan, I donated my extra

copy to the Santa Barbara Public Library so as your librarian to search the

Black Gold system. Link to AICMT is http://www. aicmt.org

Real research takes time, but also funding, but why in a country like

the USA, with all the CMT organizations we have, could no one agree

on the project before this and JUMP on it??? (Please, everyone, do

NOT answer that question!) I am feeling annoyed that " C " research in the US has

been tabled so long, and we are just now hearing about the first clinical

trials.

Academic CMT research in the States is still about " genetics " . Great. Before we

can arrest 'types' we need to know the genetic background.

But, I'm sure you realize USA academics either publish or perish -

easier to write about genetics than to have to first come up with

funding for a project involving something so simple as a standard

Vitamin! Plus, does it make you wonder why no one in the USA ever thought of

trying Ascorbic Acid/C on CMT before this? (Please don't answer this either!)

For you, I hope you do get to participate in the trials. You are

fortunate that you're at Hopkins. Most with CMT are not. Also know

that only in studying 30 generations of CMT in mice, was CMT

completely arrested. It will take some time and many trials of C with different

populations to get to the point that the mouse study did, if in fact, C is found

to work in CMT humans. One small glitch - the mice synthesize C, humans do not,

therefore that is why humans need to take so much of it for results and keep

taking it. The synthesization 'factor' of C in humans in the trials is what I'll

be watching the most.

~ Gretchen