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Re: That NT-3! for gretchen

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Gretchen,do u have any idea when they might begin working on this

research for nt3??

thanks!

Jimmy

> Don,

>

> First of all, that initial NT3 success for CMT 1A last October was

> groundbreaking. But remember, there were 8 people in the research

> trials. 4 received NT-3 and symptoms improved. 4 did not and their

CMT

> progressed when measured. Those 4 who received the CMT are still

being

> monitored.

>

> Dr. Sahenk and her colleague, Dr. Cedarbaum, will be presenting

their

> research findings at a Neurology meeting. Remember, Regeneron

> pharmaceuticals was one of the grantees for the funding of this;

they

> also supplied the packaging which is extremely expensive. Can you

> imagine counting individual nerve fibers by hand on each candidate?

>

> Then there is the growth factor involved. Remember, all candidates

for

> trials were not only typed for CMT 1A but were screened for cancer.

More

> trials of NT-3 are needed to determine if the growth factor causes

any

> tumorous growths and a larger number of participants is needed. I'm

sure

> you can imagine all the questions that NT-3 has surfaced.

>

> While the initial grant was very small, $35,000 - we cannot expect

> researchers to continue significant work for that amount of

> compensation. That is why is trying to finalize a plan for

Disney

> and Lego's summer profits percentage, so that a much larger portion

of

> money is raised.

>

> In addition, once all the NT-3 partners are in place, further trials

> will be at trusted medical centers in the nation. (US) Naturally,

all of

> this takes time.

>

> I understand your concern and impatientence. I feel the same way. I

do

> not feel that lobbying pharmeceutical companies would do much good -

but

> why not lobby your senators/congressmen for NT-3 financial

> appropriations from National Institute of Health? Realistically,

> researchers will go where the $ is.

>

> Your swimming sounds wonderful and your goals are admirable. Keep

> working in this regard and keep your goals in front of you.

Meantime,

> perhaps your gym can help you with some other routines to achieve

your

> best fitness. You know, Pilates is not just for women and can have

some

> remarkable results. I have already noticed results in breathing,

> balance, walking, and when I swim, a better/longer stroke.

>

> NT-3 is not designed to take away our CMT or make us bionic. It was

> proved that it can regenerate nerve cells in Type 1A. Remember Type

1A

> is demylenating. Now this has raised other questions: for initial

dose

> how much NT-3? How long will it last? Are repeated injections

necessary?

> Is there a potential for totally arresting CMT 1A with NT-3? If so,

how?

> If a patient is given NT-3 and nerve cells regenerate, will those

nerve

> cells one day 'loose their punch'. So you see - many questions still

> yet, and more human trials are necessary.

>

> When the new trials do begin, they will be at trusted research

centers

> across the U.S. and I imagine those research centers will also be

> involved in some aspect of financial support.

>

> ~ Gretchen

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Hi Jimmy,

Well, I am assuming you mean more clinical trials on humans since NT-3

has been around for quite some time in animal models. I have no idea

when further clinical trials begin - no doubt if a nice chunk of change

like $350,000 were dangled in front of researchers, they'd come running!

I will let you know (and our whole group here too) if I learn of further

information. Remember what power their is in Hope.

~ Gretchen

Jimmy wrote:

> Gretchen,do u have any idea when they might begin working on this

> research for nt3??

> thanks!

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