CMTA Launches Strategy to Accelerate Research (STAR)

[Guest guest]

Hi ,

So good to hear from you and hear you're doing so well. What an upper

your post was!

Yes, I am familiar with STAR. As I understand it, most of it will be

for CMT 1A, and then in Project 3, research will include 1X, 2, and

4. I'd like to know who this 'international team is' - most likely it

is already CMT medical professionals in the field and their associates.

I'd also like to see more research into Onapristone as well as the

use of supplements, like Curcumin and Citicoline. I feel every avenue should be

explored and I support more human trials all of it.

Someday I have this vision of researchers and persons with CMT

sitting down together - on equal level - to discuss what individual

needs are, person to person, not just 'doctor/patient' relationship. (I don't

just mean needs like AFOs or pain meds)This is because we are all so different,

I'm not sure if ONE specific 'treatment' would work for all people with CMT, or

even for all persons with CMT 1A. Here at we've seen how people respond

to Vitamin C (some of those with 1A have responded well, others have had a few

problems,like those with Type 2). And more recently, we've

seen reports of members who respond well to Citicoline, and those

that don't)

Exploring genetic mutations is critical because several years ago we

saw genes can jump chromosomes, thereby muddying the waters.

I'd also like to see some authentic research on the psychological and emotional

manifestations of CMT and real treatment methods initiated (not just the 'usual

counseling' either)

But then, what the he** do I know? lol, I just try to follow the

research and learn about more CMT day by day. There's my 5 cents worth. With the

US economy cratering, I only hope that the US researchers will have enough

backing to keep STAR going.

Gretchen