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[IP] JDRF research retreat

I attended the Annual Research Retreat in NYC a few weeks ago as part of the
JDRF Voices Council, and was asked to do a recap for my local Tucson JDRF
Board. I thought you people would be interested in the report as well...if
not...skip and go to the next post B HAPPY NEW YEAR, love Sara Smarty Pants

First a little history lesson, if you will
indulge me. Diabetes has been around a LONG time, first notated by
and on and on through the ages. A brief but fascinating history of the disease
is included in the 1919 Rockefeller Monograph entitled "Total Dietary
regulation in the Treatment of Diabetes," by Frederick Allen et al.B  At
different times, it was thought to be a problem with the kidneys or the
or the blood, or the psyche. Proper diagnosis of diabetes became possible in
the 1600s when Thomas Willis noted that the "urine is wonderfully sweet,
as if imbued with honey or sugar," as if he was describing a fine
wine!B  Even hundreds of years ago,B doctors and scientists were
determined to find out what caused the fatal dis-function of the body, and
to find better, more effective ways to treat it. B 

In the late 1700s, one treatment called for
confinement to the house, preferably to one room, with the utmost possible
quiet and avoidance of exercise. THAT I could live with. The diet however,
called for milk and lime water, bread and butter, blood pudding, game and
rancid OLD meats and lots of fat. The skin was to be greased daily with hog's
lard, and flannel was to be worn.B 
Another called for the drinking of melted beef fat mixed with hot oil,
and regular bleedings....In the mid 1800s, they threw out the rancid meat
treatments in exchange for alcohol, (which works for me). Milk was forbidden,
careful mastication was encouraged, and finally bleeding and opium treatments
were condemned. About 150 years ago, they finally determined that it was the
pancreas that was the offending organ, and with not-yet-invented, laser like
focus, they began to study it, often in tandem with more and more rigid
restrictions.B In 1911, a Dr. Hodgson advocated eating a raw egg with a few
ounces of olive oil several times a day, and that's it.B 
AllB  that to say, thank GOD, I was diagnosed in April of 1974, when I could
treat my diabetes with a bottle of insulin and a plastic disposable syringe.
Though i must say the 30 unit syringe I use today, with its super fine needle
is a lot more palatable than
the 100 unit syringe with the pool cue sized needle I first used.
But had I been diagnosed a mere 60 years
earlier in 1914, my parents would have been told that I had an almost 100%
fatal disease, Like my great aunt Gigi, who was diagnosed in 1918, I may not
have lived long enough to see the next christmas.B  If the high sugars didn't
do me in, i most
likely would have died of starvation. For, as the monograph outlines, until
1922 and the discovery of insulin, the only way to stave off death was
to starve the patient.B  As Dr. Allen
wrote, "Expectations of an actual cure, in the sense of a restoration of
the normal power of food assimilation will be disappointed under any dietetic
treatment, and the need of some more potent therapy than diet is a keen
stimulus to research."
I think you get the point that research has
never stopped on this disease. And that brings me to the point of this talk.
just got back from the annual Research Retreat held by the JDRF in New York,
Stacy asked me to give you a little update. The first part of the meeting was
the T1D Voices Council of which I am a member, along with 15 other voices
around the world, other T1Ds, medical professionals including our own Dr.
Insel's brother, several parents and even a grandmother. We first reviewed
of the budget considerations of JDRF, and without
going into the specific details and the way the funding is split up into
different buckets, I can assure you that it DOES go to research that will
to a Cure. We also discussed some issues JDRF faces with clinical trials and
what the role of the individual is in terms of developing these. There are
several places onB  line including the
JDRF web site, medivizor and the National Institute of Health where you can
to enroll and be alerted when a trial comes up in your area...not many in
Lastly, we charged JDRF to
come up with some marketing campaign surrounding the 100 year anniversary of
the discovery of insulin in 2022. We think it will be a great awareness and
advocacy tool and hope that they can really put some effort into it
It was then on to the Research
retreat where we got to sit in on the talks given by various researchers, the
most interesting to me was that of Viacyte, a bio tech company in San Diego.
head from their lead researcher about this credit card sized thingie that
be implanted in the back and will ultimately offer 24 months of diabetes-free
living. While JDRF is waiting for the clinical trials to go forward (Phase I
and II begin next year, by the way), they are working with another company to
develop the capsule materials. The encapsulated islet cells die without
so this other company has developed this material that is actually being
incorporated into the bodyB  - I wish i
had that slides, but you could SEE blood vessels growing in and around
it...bringing blood to the islet cells
And it is partnerships like this that
was the focus of another talk by Pure Tech - this is basically a Venture
Capital Firm that, in partnership with JDRF have createdB T1D
InnovationsB which "will accelerate the development of innovative T1D
and enhance our ability of turning Type One into Type None.B  Basically, T1D
InnovationsB will create and fund companies to
translate discoveries into products, helping them cross the well-known
biomedical bvalley of deathb - which is the notorious gap that often
promising biomedical discoveries from being developed and reaching
patients.B  T1D
InnovationsB willB develop
new companies around promising scientific research, providing the
infrastructure and resources that are necessary to advance the research
the bvalley of deathb b from basic research to/and through clinical
developmentB  and finally to the T1D community.
We also heard from a guy at Pfizer who talked about
another collaboration between Pharma, academic science and JDRF. The upshot
that was that if, after all the study and research, Pfizer doesn't want to
invest to bring it to market,B  it reverts
back to JDRF's or the academic instuitutions control to find another pharma
company to bring it to the market.
There is also a lot of research
being done on restoring and rejuvenating islet cells which may someday lead
a vaccine that everyone gets, like the measles or polio vaccine. This would
the body from developing the disease in the first place, but in the nearer
term, that very research will be used hand in hand with the encapsulation
Yes, the focus is definitely
still on ending this disease. Some of the work being funded on islet and beta
cell treatments, antibody treatments, smart insulin and especially the
artificial pancreas, all point to exponential Improvements in treatments,
reversals and some day, the prevention of the disease world wide.
The official line from JDRF is that "The path forward from Type One to Type
None is a
continuum of therapies that leads to a cure. As our research programs and
therapies move through the pipeline, new treatments will progressively remove
the daily burden, side effects, and complications."
German Pathologist, Bernhard Naunyn, said, "the
interest in novelty may be granted also to physicians...The therapy of
has been well founded by painstaking labor, highly fruitful in all
we may be proud of that which has been achieved and yielded here." He
wrote that in 1906, and I think it is still true.
We will turn Type One into Type None and on
my and Errin and Brody and Aidan and Mia and all the other's behalf, Thank
for your support and belief in this organization!
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