That NT-3!

[Guest guest]

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