I think some kind of weekly updates or so would be very good for
those of us hoping this will work in humans. Even if it was just an
update on the progress of the equipment or updates on other elements
of this research that is supposedly going on as well. Some kind of
news helps keep that hope stronger that something will eventually
cure this disease. That is about all we have to cling to that helps
get through each day of dealing with this disease. On the down
side. Remember that this is only the first leg of a two leg
treatment. You mention waiting 5 years for FDA safety approval.
Last estimate I was was 10 years to identify the element needed to
carry out the second phase of the treatment. All this together means
that even if things go well it will llikely be 20 years before any
cure would even be possible for the general public. So any news that
we can get to keep our motivation up is of significant importance in
dealing with this disease. If someone at the Faustman lab could give
us something on a regular more frequent basis it would in my opinion
be very helpful in many ways.

--- In nathanfaustmantrials@yahoogroups.com, Anthony <asalvioli@...>
wrote:
>
> Thank you Patsy. I am a person living with this horrible disease
24/7. And when there was so much chatter a year ago about this
research and to watch that chatter deteriorate it just seemed that
things were not as great as we all had hoped.
>
> Hopefully, once the human trials actually begin we can expect to
read some news. So, it looks like trials won't begin for another
year.
>
> I just wish we could get to the human trials quickly so that we
know that there is a chance that this may work! Preparation is
important, I understand.
>
> BUT, remember, all the preparation in the world will not help if
the research is flawed. If this technique works in humans, then I
will be content waiting 5 years for the FDA to approve the safety,
etc. But right now we don't even know that it works (in humans)!
>
> Hopefully, we will all know sooner than later.
>
> -Anthony
>
>
> Patsy Van Huyck <patsy@...> wrote:
Anthony,
>
> You may be correct. However, given that there have been no human
trails
> yet, and therefore we do not really know if it will translate to
humans
> yet, I will continue to consider this promising research.
>
> They are being very careful upfront to increase their chance of
success
> in the human trials. While it seems to us like nothing is
happening,
> there is actually quite a bit of preparation for the human trials
> occurring at this time.
>
> For those of us that are living with this disease 24/7 (either as
the
> patient or as their caregiver), the wait for a cure can seem
endless.
> However, there are multiple promising research projects at various
> stages of testing that encourage me to think that there is a cure
on the
> horizon. Whether it will take 5 years, or 10, or more is
anybody's guess.
>
> Patsy
>
>
>
>
>
> ---------------------------------
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>