Complete Arrestment for CMT in our lifetime

July 10, 2006

Hi Pam,

Yes, you bet I believe we will see complete arrestment for CMT in our

lifetime. Plus I feel we will see some new therapies for symptoms

management 'exploding' in about 5 years time.

Just in the last 3 years, there has been so much research done on

stopping CMT. As I mentioned earlier to Leena, the NT-3 and whole

issue of 'nerve growth factors', positive results from the Vitamin C

trials, and something I forgot to mention, the use of RNA in gene

therapy.

I do try to read alot of research and follow it, mainly because

the 'computer age' makes information so accessible. I only wish I had

a PC and the wisdom when I was a teen with CMT because I would have

had access to information I needed. Of course, lol, I would have had

to start in about 1965 - which I didn't do,lol, because I was

in high school and riding horses on the weekends, but even my

neurologists would have had a better way to access information too.

I guess I figure I have lived with CMT so long, I might as well start

learning about it. That began when I joined CMT International and

received their newsletter in the 1980's, I think, then with the

introduction of the PC and the Net, I still wasn't satisfied so

that 'drive' in me keeps me going. I was in a CMT email group for

awhile, learned a few things, that group imploded from within, then I

saw an unmet need in the CMT community, and gave birth (lol) to

in 1999.

Something else about CMT arrestment - there are so many types of CMT,

it *may* take different approaches to arrestment for the different

types, but I believe this will happen in our lifetime. Because CMT 1A

affects about 70% of persons with CMT, I believe arrestment will

begin here. Followed by Type X and then the type 2's.

I just wish there was better fundraising and MAJOR fundraising for

CMT research projects (and I don't mean here Government $ or MDA $),

but private sector support. More money = more research. I think about

this alot and wonder sometimes how I can use my fundraising

background in this regard.

Hang in there. Stay with us. You never know what research news is

right around the corner! There IS hope! Believe this!

~ Gretchen

Recommended Posts