Dear Still Type One,
We are all disappointed that it has taken so long for these trials
to move forward. HOwever, I don't believe Dr. Faustman expected how
long it would take to raise funding for the trials. We all would
have loved to have her start in 2003, but the cold reality is it
took MUCH LONGER TO RAISE THE FUNDS THAN EXPECTED. There were too
many skeptics that a cure could be found, that many people who found
out about this research did nothing to help spread the word or help
her raise funds! When you received her email in 2001, did you begin
telling everyone you knew about the research? Did you begin raising
awareness and funds? Probably not, as the majority of people
didn't. I still meet people today with type 1 diabetes who know
nothing about this research and I'm amazed. And half of the people
who do know something about it, have no idea the real implications
involved - that there are NO transplants involved, meaning NO
immunosuppresants, and it would mean a REAL cure.
YOu seem very discouraged, and I'm sure you are as living with type
1 is no picnic. We all live with it whether personally or through a
family member, but we have a great HOPE in this research. Let's all
look at the GREAT news that DRs. Nathan/Faustman finally have the
first installment of funds - YEAH!!! and the research is moving
forward! Maybe not at the pace we'd like, but I'm willing to wait
for the research to be done properly and get a cure for my son, than
rush it because of my own selfish impatience. I get very frustrated
too, when things get delayed, but venting on this site does me no
good, because we all feel that way... instead this is to be a place
where we can encourage one another that the research is heading in
the right direction.
I have had the privilege of meeting Dr. FAustman and she is a great
woman who is dedicated to finding a cure for Type 1 diabetes.
PLease give her the credit she is due, because she is not in this
for any other reason. If something was wrong with the research I
believe she would say so, and tell us of what she intends to do
about it!
Please have patience and keep this site a positive one.
God bless,
Julie Errichetti
NJ State Captain
--- In nathanfaustmantrials@yahoogroups.com, "stilltypeone"
<stilltypeone@...> wrote:
>
> Susan, my comment was not related to Dr. Faustman's method of
> a "cure", but all the hype(remember this research was first
released
> in the July 2001 JCI), and now the subsequent delays and inclusion
> of Type II diabetics. Very very similar to Vinik's INGAP trials.
>
> INGAP stands for Islet Neogenisis Associated Protien, and has
> nothing to do with canines. INGAP did show a positive result in
the
> Syrian hamster. You are correct as far as I know INGAP did not
show
> positive results in the NOD mouse.
>
> I wish I would of saved the email that Dr. Faustman sent me in
> August of 2001 stating she would be in human trials by 2003!
> Fortunately I was not the only one to receive that email.
>
>
>
>
>
> --- In nathanfaustmantrials@yahoogroups.com, "susan_root"
> <susan_root@> wrote:
> >
> > Stilltypeone,
> > In response to your statement below, the animal research with
> > INGAP is not even close to what Dr. Faustman's research and data
> is
> > in the NOD mouse model and humans. It is my understanding that
> INGAP
> > results in dogs ( not an autoimmune disease causing diabetes
> animal
> > model) led to the enormous amounts of money supporting its human
> > clinical work. Most importantly, INGAP did not reverse
established
> > diabetes in the NOD mouse model.
> > As far as I can remember, Dr. Nathan and Dr. Faustman's human
> > clinical trial using BCG always had the plan to test BCG in a
> type
> > I group and type II diabetes group ( as well as the "normal"
> > control). It is also my understanding that the type II diabetes
> > group will be used as another "comparable" group of which they
do
> > not expect positive results. The seriousness of Dr. Faustman's
> > discoveries is that if her developed human blood assay for
> > autoimmunity and treatment works in humans with type I diabetes,
> it
> > may very well carry over to the vast number of other autoimmune
> > diseases.
> >
> >
> > --- In nathanfaustmantrials@yahoogroups.com, "stilltypeone"
> > <stilltypeone@> wrote:
> > >
> > > This research is reminding me more and more of Dr. Vinik's
INGAP
> > > protein. Lot's of fanfare in the begining then when INGAP
> failed
> > > for Type I's, Type II's were also included in the research.
> > > I'm sure this provided the work more dollars through grants.
> > > The results were the same, INGAP failed to provide a
clinically
> > > significant effect.
> > >
> > >
> > >
> > >
> > > --- In nathanfaustmantrials@yahoogroups.com, "stacy_lavery"
> > > <stacy_lavery@> wrote:
> > > >
> > > > I was actually wondering the same thing regarding the
> > recruitment
> > > of
> > > > Type 2 patients since we all know they are two fundamentally
> > > different
> > > > disease processes. I'm trying to find out the rationale
behind
> > > > recruiting Type 2 patients for the trial, and I will post
the
> > > answers
> > > > when I find out.
> > > >
> > > > From a fundraising standpoint, if there is hope that it can
> help
> > > with
> > > > Type 2 as well, this broadens our audience 10-fold. Plus,
> > > eradicating
> > > > such a devastating and prevalent disease such as type 2,
which
> > also
> > > > represents such a huge drain on our healthcare system, would
be
> > > > awesome. Not only does 4-year-old daughter have Type 1, but
> > > SEVERAL
> > > > of my family members have Type 2, and I had gestational
> diabetes
> > > with
> > > > both my pregnancies, so both types have touched my family.
> > > Therefore,
> > > > I the idea of this being able to help with both diseases
would
> be
> > > > music to my ears. I just don't understand how, since Dr.
F's
> > > protocol
> > > > is about stopping the autoimmune attack and not helping with
> > > insulin
> > > > resistance.
> > > >
> > > > I'm rambling.... like I started out to say - I will see what
I
> > can
> > > > find out about the change to include Type 2s, and post what
I
> > find
> > > out.
> > > >
> > > > Thanks,
> > > > Stacy Lavery
> > > > Team MD Captain, JLN Campaign
> > > > Moderator, Nathan/Faustman Trials Yahoo Group
> > > >
> > > >
> > > > --- In nathanfaustmantrials@yahoogroups.com, "stilltypeone"
> > > > <stilltypeone@> wrote:
> > > > >
> > > > > Apparently in "Phase 3" of the Faustman trials they will
> > include
> > > > > people with Type 2 diabetes. WTF?
> > > > >
> > > > > Project 3:
> > > > > In year two and three of this project, patients with type
1
> > and
> > > type 2
> > > > > diabetes will be recruited along with age matched
controls.
> > > Patients
> > > > > will be initially characterized as to levels of
autoreactive
> T
> > > cells
> > > > > using the assay developed in Project 1. Changes in the
> levels
> > of
> > > > > autoreactive T cells in volunteers with type 1 diabetes
will
> > be
> > > > > monitored following BCG treatment.
> > > > >
> > > >
> > >
> >
>