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Re: [IP] JDRF research retreat



Thank you for a great New Year message!

On Tuesday, December 31, 2013, S. Falconer wrote:

> 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
> Hippocrates,
> 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
> liver,
> 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
> endeavored
> 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
> other
> 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
> dietary
> 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
> 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.
> B
> 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
> literally
> 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."
> B
> I think you get the point that research has
> never stopped on this disease. And that brings me to the point of this
> talk.
> I
> just got back from the annual Research Retreat held by the JDRF in New
> York,
> and
> 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
> from
> around the world, other T1Ds, medical professionals including our own Dr.
> Insel's brother, several parents and even a grandmother. We first reviewed
> some
> 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
> lead
> 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
> go
> to enroll and be alerted when a trial comes up in your area...not many in
> Tucson.
> B
> 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
> B
> 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.
> We
> head from their lead researcher about this credit card sized thingie that
> will
> 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
> insulin
> 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
> B
> 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
> therapies
> 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 b valley of deathb  - which is the notorious gap that often
> prevents
> 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
> across
> the b valley of deathb  b  from basic research to/and through clinical
> developmentB  and finally to the T1D community.
> B
> We also heard from a guy at Pfizer who talked about
> another collaboration between Pharma, academic science and JDRF. The upshot
> of
> 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.
> B
> There is also a lot of research
> being done on restoring and rejuvenating islet cells which may someday lead
> to
> a vaccine that everyone gets, like the measles or polio vaccine. This would
> prevent
> 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
> work
> 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,
> eventual
> reversals and some day, the prevention of the disease world wide.
> B
> 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."
> B
> German Pathologist, Bernhard Naunyn, said, "the
> interest in novelty may be granted also to physicians...The therapy of
> diabetes
> has been well founded by painstaking labor, highly fruitful in all
> directions;
> 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.
> B
> 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
> you
> for your support and belief in this organization!
> .
> Follow us at https://www.twitter.com/insulinpumpers
> Make a long URL short at http://type1.org
.
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