Thank you Sue for the very informative information. I am on a
mailing list from the JDRF chapter in Illinois. So I get information
on all of the fund raisers going on in the area. I also have the e-
mail addresses to everyone else who gets this information. I asked
everyone including the Chapter representative to sign up and be a
part of our Trials Group website. The Chapter Representative was not
aware of it and said that she would sign up. I wonder if a letter
writing campaign to all of the Chapter representatives in the country
would have an impact in JDRF's decision and whether it might still be
possible for them to reverse their decision on this. What does
everyone think?
Ellen
--- In nathanfaustmantrials@yahoogroups.com, Sue root
<susan_root@...> wrote:
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> Joshua,
> Actions speak louder than words.
> JDRF's reasoning behind the multiple rejections in 2002-
2004 after Dr. Faustman's published discovery that led to
reversing and curing diabetes in adult endstage diseased NOD mice for
the first time was that they needed to replicate the research. The
research was replicated successfully by 5 independent labs (including
an NIH group with 100% success).
> I have a 2004 letter written to me by the head of the JDRF Lay
Review Committee at that time. She and that committee's job is to act
as the unbiased review for the best research leading to a cure for
the disease and to represent the many families of children with type
I diabetes who are members of JDRF. In that letter, she makes 2
statements about Dr. Faustman's research:
> 1.BCG has already been ruled out in humans in the past with failed
human trials. The past human trials that she refers to used only
1 vaccinated dose of BCG in early onset patients. Back then, BCG had
an effect in preventing diabetes in mice with this low dose, but the
scientists did not know how or why and went into human trials
anyway. The Faustman lab has shown that 1 vaccinated dose
is not enough to have an end effect of
normoglycemia. The Faustman lab has shown that the
effect of an immune stimulant like BCG and CFA results
in the body's production of TNF alpha which kills off the
autoreactive T cells (This was replicated in mice I believe
in Canada). The lab can now measure this effectively in humans
and knows that it will take much more than 1 vaccinated dose to
have the chance of depleting all of the autoreactive T cells and
possibly seeing any increase in
> C-peptide, decrease in insulin requirements or
normoglycemia.
>
> 2. Spleen cell transplants can't be used as a
treatment to cure diabetes. The Faustman lab has never had
any plan to use spleen cell transplants as part of their protocol to
cure diabetes in humans. One other important thing to mention. Here
you have the head of the lay review committee making this statement,
which has been repeated by other JDRF sources in the past. However,
if you look on the JDRF website under JDRF funded research, the
replication of Dr. Faustman's mice research by Anita Chong
states "Should we observe successfully differentiation of
splenocytes into insulin-secreting cells, we will embark on a
clinical trial of human splenocyte transplantation..."
>
> Dr. Faustman's research has been published in peer-review world
renowned science journals. Her publications have been sited in the
reference sections of other scientists publications, including JDRF
funded ones. Dr. Faustman's research has been reviewed and supported
positively by the Massachusetts General Hospital's internal review
board and the Iacocca Foundation's scientific reveiw board.
> JDRF is well aware of the research that is going on in the Faustman
lab.
>
> I took 9 months and read the published science papers by
Dr. Faustman and kept asking questions. I also took this time to read
published science papers by other scientists and contacted many of
them in the US and other countries to ask specific questions
about their mice research.
> Nobody can guarantee that the Faustman/Nathan human trial will
succeed.
> However, I can state one thing..there is no reason what so ever for
this research not to be funded and not to go forward.
> Sue
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> --- On Mon, 5/26/08, Joshua Levy joshua2levy@... wrote:
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> From: Joshua Levy joshua2levy@...
> Subject: Re: [nathanfaustmantrials] Phase II Trials Rejected by JDRF
> To: nathanfaustmantrials@yahoogroups.com
> Date: Monday, May 26, 2008, 12:01 PM
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> Ellen write the text in Blue:
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> Why does JDRF keep rejecting Dr. Faustman?
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> We can not answer this question, because none of us knows why JDRF
does anything that it does. We can only speculate. We can
say things like "I think JDRF rejected it because of blah blah
blah" or "It's obvious [in my opinion] that JDRF rejected it because
of blah blah blah" or anything else. But these things come from
us and not JDRF. And they are all just blah blah blah.
And it says much more about what we believe, than why JDRF did what
it did.
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> Does JDRF know something that we don't know about this research?
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> JDRF has whatever detailed request that Faustman gave them, both
now and in the past. You can be sure that they have also read
every paper that Faustman has published in this
area. Who on this list has done all that? So
I think that it is very fair to say that JDRF knows something that we
don't know about Faustman's research. Not some secret
knowledge, but all the publicly available knowledge (and read by
people who do diabetes research professionally, and who have very
wide experience in this area). "We" on the other hand, mostly
have not read Faustmans funding requests. "We" mostly
have not read her published papers, etc. Who among
us has read all of this work and compared it to the similar work done
elsewhere?
> Joshua Levy
>