Re: New Therapy For CMT Type 1A

[Guest guest]

Hello,

Thanks great.Will it help people who have CMT 1x just curios.I have cmt 1

x.Mice and people are different so im curios if it will work the new therapy.

>

> Yesterday I had my yearly checkup with my neurologist. He is big in research

and knowing I have CMT Type 1A he had another doctor come to see me also. He

said they now have a therapy that regenerates nerves in mice. He thought in a

year or so it would be used on people pending government approval. He didn't use

the word cure. He sounded very positive about it which is unlike him. He seemed

very interested because I have Type 1A, I don't know what that means.

> Bob

>

[Guest guest]

Bob and ,

Any 'new' therapy for any types of CMT must undergo several stages of clinical

trials. Because CMT 1A is the most common type of CMT, that's #1 and that's what

the STAR Initiative is all about. Once researchers find a treatment for 1A, it

will shed light onto Type X and Type 2. Therapies are one thing (like slowing

down atrophy or blocking it) but the genetics of it all is still in your own

unique DNA regardless of 'types'. Totally arresting CMT in the world is the

goal.

As said, please be careful about people, doctors, anyone, anything that

offers 'a cure now' or a 'miracle' or a 'proven new therapy'. Don't part with

you r $ out of desperation or with something like Botox that willmake your CMT

worse. Make sure you read all the background information on a 'new therapy' -

even if a doctor says " sure it will work " - ask for the articles and research

that * proves this *.

If a certain doctor is promoting something for you, check it out. (many do

because they have a financial stake in it, or a pharmaceutical rep pitched a

convincing sell) In addition, for questionable therapies take a look through all

at Quackwatch.com (you can also get their free newsletter)

Mice ARE different than humans. We have already seen this with Ascorbic Acid

(Vitamin C). Mice can synthesize it, humans cannot. I refer you to our Files on

the Ascorbic Acid research.

Bob, would you please share with us who your neurologist is and where he gets

his information? I'd appreciate it.

Gretchen

[Guest guest]

Gretchen,

My neurologist is in Ohio and one of the leading researchers in the nation for

CMT. I do not know if he would like me releasing his name. He has been mentioned

in Quest magazine along with his picture at least three times. Once he was on

the Jerry MDA Telethon. I have the highest respect for him. I have asked

him how his research is going and he says it is a slow process but a cure will

be found but probably not in our life time. I have been seeing him for about 25

years and I'm sure he is not in it for a quick buck. He is the director of the

Center for Gene Therapy. He never used the word cure but did say there was a

gene therapy that has worked on mice to regenerate nerves and he thought it

might be used on people in a year or so depending on funding.

Bob