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This is a joke, right?   Message List  
Reply | Forward Message #138 of 634 |
Re: This is a joke, right?

We all are excited and anxious for the clinical trials to begin as
soon as possible. As a person who has lived with type 1 for more than
10 years and whose mother has lived with type 1 most of her life, I
too wish the trials could begin as soon as possible.

However, Drs. Faustman and Nathan must do their due dilligence as
researchers before they begin the human clinical trials. As I'm sure
you know, curing NOD mice is very different from curing humans. Do
you want people with type 1 -- especially children, who already must
deal with this horrendous disease -- to be involved with a clinical
trial that is not well planned or executed? There are good reasons
why FDA has standards and structures in place governing human
clinical trials, and our inpatience is not a reason to jump over
them.

As you mention, the automation process takes time (and money), but it
is necessary before starting the work in humans. Dr. Faustman has
been extremely busy creating the blood assay and working with the
mice WITHOUT the automation -- imagine how hard it would be to handle
large numbers of humans in clinical trials without that automation!
When I donated to her lab, she could only do something like 2 blood
draws a day because they didn't have the staff to process the
samples. Automation will make processing larger quantities of blood
possible. In addition, you know that not only the community of people
with diabetes, but also the autoimmune community if not the whole
world, will be waiting with baited breath for every report of
progress in the clinical trial, and the automation will help that
along.

I know I and many others are thankful that we heard of Dr. Faustman's
research when we did -- even though it was not as early as you in
2001 -- because knowing that it is progressing (even at a slower pace
than we all would like), gives us hope. I'm going to have diabetes
until 2008 whether I like it or not. At least now, I can have some
hope for a cure until then, and I have more motivation to take good
care of myself and my blood sugars so that I can be in great shape to
see the day when I can be cured.

Dr. Faustman's research has made a lot of progress since 2001, and I
am confident that her team has used every minute of that time as
effectively as they could. For that, and for what she is working to
do, I think she deserves our gratitude and praise, not bitterness
that it didn't come sooner.

Jenny Haliski
Moderator, NathanFaustmanTrials
JoinLeeNow Captain, Washington, D.C.

--- In nathanfaustmantrials@yahoogroups.com, "stilltypeone"
<stilltypeone@...> wrote:
>
> I can't believe trials won't begin until 2008, what?
> I first contacted Dr. Faustman in July of 2001, shortly after her
> publication in the JCI. At that time she was hopeful that human
> clinical trials would begin in 2003! Obviously that did not
happen.
> Here we are in 2006, and now clinical trials won't begin until
2008!
> Why?
> Some have said that it is because the "automation process" needs to
be
> developed. My response to that is, she "cured" over 250 mice
WITHOUT
> the "automation" equipment. Can she not test her theory without
this
> equipment?
> Is her goal to develop automation equipment used to count bad t-
cells,
> or to cure disease?
> I am sorry and ashamed that I ever contributed my hard earned
dollars
> to this work.
>








Tue Aug 15, 2006 7:00 pm

jja100miles
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Forward
Message #138 of 634 |
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I can't believe trials won't begin until 2008, what? I first contacted Dr. Faustman in July of 2001, shortly after her publication in the JCI. At that time...
stilltypeone
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Aug 15, 2006
5:51 pm

We all are excited and anxious for the clinical trials to begin as soon as possible. As a person who has lived with type 1 for more than 10 years and whose...
Jennifer Haliski
jja100miles
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Aug 15, 2006
7:01 pm

In order to conduct a human trial appropriately, and make sure that this cure does work in people, we need to have this assay complete. Dr. Faustman likens it...
stacy_lavery
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Aug 15, 2006
7:08 pm

I know I'd love it all to be available now. But I also know some of what it takes to work with the FDA and others on new stuff. So I'm accepting this will be a...
Bernard Farrell
bernfarr
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Aug 15, 2006
7:56 pm

Bernard, what would happen if the trials began without the equipment, and say 10 people were successfully treated? Then the $$$$$ would rush to MGH. The...
stilltypeone
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Aug 17, 2006
1:57 am

I, for one, couldn't disagree more. The human trial, even on just TEN people would still require multiple blood tests, perhaps even several a day while they...
stacy_lavery
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Aug 17, 2006
3:35 pm

Stacy, did the manual blood testing for the mice take a day-and- half? How many mice were involved in the initial tests? Just wondering. Thanks in advance....
kinners1
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Aug 21, 2006
12:20 pm

Agree with you 100%. Makes no sense why a very limited trial of human subjects would not be conducted first. Lara stilltypeone <stilltypeone@...> wrote: ...
Lara
kinners1
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Aug 18, 2006
1:10 am

I completely agree with your statement. Today people want to know exactly what they are getting for their philanthropic donations. I think waiting for the...
imcimc1
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Aug 18, 2006
1:54 pm

Just a thought here- but without the automation process, and those same 10 people WERE NOT cured, then not only would the money not roll in, but the whole...
Paul Mullens
skywriter451
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Aug 17, 2006
6:30 pm

The equipment is neccessary to automate the process, NOT to verify the process. Again, I am asking can this process be done by hand, similar to what Dr....
R Hyatt
stilltypeone
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Aug 19, 2006
12:22 am

I truly believe that Dr. Faustman's research IS going to lead to, if not, BE the cure we are all so desperately waiting for. But anything worthwhile is worth...
deanne kacmar
jaysonjaclyn
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Aug 19, 2006
2:47 pm

Deanne, I take offense to your statements "stop all the negativity already" and "Instead of complaining, how about spending that time in serious prayer" 1. My...
stilltypeone
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Aug 21, 2006
12:21 pm

It's not negativity to question the process, the project plan, and where the money is going. It's smart business, particularly if some of us are contributing a...
Lara
kinners1
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Aug 21, 2006
12:21 pm

OK, so maybe this is a cheesy analogy, but this debate seems to be equivalent to some one saying, "I have a problem, I need to move 10,000 people every day...
Nancy Parr
miraclecker
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Aug 18, 2006
1:10 am

That's not the analogy. What if we did not know if LA existed? Wouldn't it make sense to send a couple people on foot first before building the plane? I...
kinners1
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Aug 21, 2006
12:26 pm

THANK YOU LARA!!!!!!!!!!!! ... before ... be ... Did ... before ... move ... next ... just ... even ... I ... take ... thorough, ... been ... defect ... have ...
stilltypeone
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Aug 21, 2006
4:27 pm

The project timeline has not been extended...it has always been estimated at 3 years costing approximately $11 million. The Iacocca Foundation and MGH publicly...
Sue root
susan_root
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Aug 21, 2006
4:28 pm

Thanks, Sue. I believe different dates were mentioned early in the fundraising process. I realize nothing can start until the researchers receive the grants. ...
Lara
kinners1
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Aug 21, 2006
5:56 pm

I understand everybody is upset with the 2008 start date. Yes, it stinks and when I think about it I do get depressed. I have type 1 for 19 years and am just...
imcimc1
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Aug 22, 2006
11:37 am

Well said, I agree 100%.Thank you. From: "imcimc1" <imcimc1@...> Reply-To: nathanfaustmantrials@yahoogroups.com To: nathanfaustmantrials@yahoogroups.com...
deanne kacmar
jaysonjaclyn
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Aug 22, 2006
4:16 pm

To be honest, I am 31 years old, have had Type I since the age of 1 and I do not believe there would be a cure in my life time. Ever since I could remember,...
Blain Getachew
blain516
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Aug 24, 2006
10:54 am

In reading several postings in this group, it has become clear to me that many people here know a lot about Faustman's research, there are many gaps in the...
Joshua Levy
joshualevy
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Aug 22, 2006
6:27 pm

Reposting a message: This message was originally posted by Sue Root yesterday, and approved last night, but somehow was lost. Here it is again: Joshua, Here...
stacy_lavery
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Aug 23, 2006
5:42 pm

Joshua, Here is some additional information for you: Most people at this forum are aware that the NOD mouse is the animal model scientists routinely use to...
susan_root
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Aug 23, 2006
6:09 pm

I have a good friend who works in cancer research and feels Dr. Faustman is the only one "on target." She feels that Dr. Trucco's work with dendritic cells is...
imcimc1
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Aug 23, 2006
7:43 pm

Joshua, I just received several emails from Dr. Trucco and Dr. Giannoukakis. They have yet to begin Phase I trials. Best estimate is safety trials will not...
stilltypeone
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Aug 24, 2006
10:57 am

This displays an important point about the use of BCG in the Nathan/Faustman trial - there won't need to be any safety trials since it's been around forever,...
stacy_lavery
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Aug 24, 2006
2:05 pm

Stacy, by definition Dr. Faustman's work will need to go through "Phase I" trials. Here are the definitions. Phase I: Researchers test a new drug or treatment...
stilltypeone
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Aug 27, 2006
9:08 pm

... How right you are. I remember reading about several studies involving BCG and type-1 diabetes. Some looked at type-1 diabetes rates amoung people who had...
Joshua Levy
joshualevy
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Aug 27, 2006
10:55 pm
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