About research

[Guest guest]

Hi Sherry,

There IS research in Canada. Dr. Mark Tarnopolosky is but one of the

many engaged in research there. And know there are others. Not too long

ago I posted some research on a new CMT genetic test assay that came

out of Quebec (I think) There is other CMT research on-going in Canada

as well. That's just it " on-going " - until publication, we wait for

results!

We don't hear much about research ANYWHERE until a paper is published,

most likely. This is a competitive process for researchers too, since

there are a limited number of journals that report on CMT work. Then

there is a 'lag time' (as I call it) where it is about 6 months AFTER a

paper is submitted and approved for publication to when it actually

appears. The research itself may have been concluded for 2 years before

that!

In the USA, academic researchers must " publish or perish " , meaning

their publications bring a certain 'honor' to the institution they work

for. I have also noticed more 'research teams' popping up (and thus

sometimes adding several universities/collaborations together). And I'm

sure you are aware the grant-making system for funding in the US leaves

much to be desired and is highly, and somewhat ridicously competitive.

Private funding for CMT research is greatly needed, but just hasn't

happened much yet. (A year or 2 ago, Bob in the MDA PR office in Tucson

told me there is a 3 year, $5 million budget for CMT - that may seem

like a lot, but, really is quite low)

European researchers have closer geographic proximities to each other

and in my observations/experience, are generally more agreeable to

sharing their research with colleagues in other countries. Although

here again, we can wait for long periods to hear good results. The

newest Vitamin C research in the Netherlands just began - the project

won't be over until November 2007, so publication wise, we may be

looking at Spring 2008. European researchers also have greater

lattitudes for study/research, and are not as restricted as the USA in

many ways.

Believe it or not, there is also quite a bit of CMT research coming out

of China. I have posted abstracts, but since the full-text versions are

written in one of the many Asian languages, I haven't attempted to find

out more (hey, I can barely translate a bit of French and Italian, but

Japanese and Chinese are way out of my league.)

I hope that gives you a better idea of the " CMT Research Picture " .

Perhaps our Canadian members can give us more information and

help you out with finding a support group there. I'm not too

knowledgeable on 'in-person' support groups in Canada. You might want

to check with MDA International on this too.

~ Gretchen

>

> Alot of what I have been reading seems to come from the USA and

> Oversea's. Do you know of places in Canada that are doing studies on

> CMT? Or if there are any support groups here?

>

> Thank you very much again this has been so helpful.I always thought I

know alot about CMT but after joining this group I realized how much I

really did NOT know.

>

> Sherry

>