Re: Update on CMT 1A Pleodrug Trials

[Guest guest]

Yes Gretchen it is amazing.

I don't know if it caught you as off guard as it caught me, but there was the

first mention of Pleodrugs just a few months ago. I believe I saw either in this

group or in googles CMT news alerts, I cannot remember which one.

But I have been researching and reading about my condition since the Internet

became viable, say 1997, and I have not heard a single word about this until

this recent first announcement I spoke of above, and now this discussion in this

group at this time.

Did it take you by surprise?

I was gob smacked, as my foreign exchange brother would say.

Curious,

On Dec 5, 2010, at 9:22 AM, gfijig wrote:

> Hi and Caroline,

>

> Here's an answer to your question about Pharnex Pleodrugs for CMT 1A.

>

> The phase II trial will last until end 2012 but we might have intermediary

results end 2011. (Think Nov/Dec. of next year!)

>

> For your information, in order to maximise thechance to treat CMT1A, 2 other

different cocktails will enter phase II before end of this trial. (Amazing what

is happpening) !!!!

>

> This is from Professor ()Cohen who is working on the trials. (comments

are mine:)

>

> And Caroline, I think further trials will be determined after the end of 2011,

because as I understand it, Ibsen, a biopharmeceutical company will be taking

over. Since the drugs used in the 'cocktail mix' are already on the market,they

will no doubt want to conduct trials and then prepare for drug delivery. I'm not

sure if this will stay a liquid or be in pill form, or patch form or whatever.

>

> Certainly a real upper the way I look at it!

>

> Gretchen

>

>

[Guest guest]

,

No, it did not take me by surprize. I knew about it back in 2007 when Truffle

Capital got involved.

Gretchen

[Guest guest]

Wow!

Ok, I was very busy in 07 and 08 making life changes, which may be whby I missed

it.

Truffle Capital?

On Dec 6, 2010, at 9:43 AM, gfijig wrote:

> ,

>

> No, it did not take me by surprize. I knew about it back in 2007 when Truffle

Capital got involved.

>

> Gretchen

[Guest guest]

,

Meet Dr. Cohen who's heading up the Pharnext trials

http://wn.com/daniel_cohen__pharnext

about Truffle http://www.truffle.com/leading_European_VC_investor.php

and http://www.truffle.com/investments_life_sciences_Pharnext.php

I think I posted something about this in 2007, I'll see if I can find it in our

Archives.

Gretchen

[Guest guest]

If this drug does what it is supposed to do what does that mean for us, what

will it do for somebody with CMT?

Thanks,

Josh

>

> ,

>

>

> Meet Dr. Cohen who's heading up the Pharnext trials

http://wn.com/daniel_cohen__pharnext

>

> about Truffle http://www.truffle.com/leading_European_VC_investor.php

>

> and http://www.truffle.com/investments_life_sciences_Pharnext.php

>

>

> I think I posted something about this in 2007, I'll see if I can find it in

our Archives.

>

>

> Gretchen

>

[Guest guest]

Hi Josh,

This first Pleodrug will be to slow the progression and severity of CMT 1A.

After that success, 1) Pledodrugs may be in trials for other types of CMT and

with that success, hopefully complete arrestment of CMT once and for all and

then I can close down and start " I * HAD * CMT!

The possibilities for pleodrugs are endless!

Gretchen

[Guest guest]

From your mouth to g-ds ear!!!!

Jackie

<and then I can close down and start " I * HAD * CMT!

[Guest guest]

Do we have to train our muscles even after taking the drug, the muscles that

disappeared before we take the drug ?

I was told that lost muscles are difficult to be rebuilt by a neurologist, is

this right?

Caroline

[Guest guest]

Hi Caroline,

Right now, in these Phase 2 trials, Dr. Cohen and his team are using a drug

combination that slows down/and or stops the progression of CMT. While this

trial goes on, some other drugs will be added to the liquid form during the

process. The first thing to do is slow and stop the progression of CMT 1A.

CMT is a disease of the nerves, which can cause muscle atrophy in the feet and

hands. So CMT is not a disease of muscles per se.

And yes, right now there is no way to 'reverse' atrophy that has already

happened. The best we can do is exercise and build up the muscles that haven't

atrophied due to nerve dysfunction due to myelin coating or axonal problems.

My example - in my legs,I have slight loss in the peroneal muscle (the one down

the front of the leg) - so exercises I do, deep water running, cardio

aquaerobics, crazy eights, etc., and something as simple as walking in sand

strengthen surounding muscles.

In addition, nerves in the body can re-innervate themselves for a time,

giving more time for muscle strengthening. Have you read Dr. Vinci's book on

CMT? He explains this better than I can.

Gretchen