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Re: [IP] Blinders on the 'cure'
Continuing my reply to Andy/Spot about JDRF's "focus"....Since I've
served on the lay review committee for 3 years now, I've seen the shifting
"focus" & the rationale behind those decisions. I recently participated in a
review session in Paris ( which you can read the results of at www.,jdrf.org
on the left hand side) which clearly "speaks to" the new philosophy. After a
3 yr "behind the scenes" effort, JDRF finally succeeded in getting the French
govt. and the Fondation pour la Recherche Medicale to join us in "partnering"
on this project. End result: there are 3 major projects now underway with 3
renowned researchers at the helm, for which JDRF dollars are "only" covering
33% of the costs. Were it not for "leveraging" our ability to fund research,
these studies would not have been funded.
JDRF was planning to spend $130 million on research this past fiscal
year, a significant increase from the previous $115 million...BUT..in the
wake of 9/11 and the economic downturn, that figure was recalculated to $100
million, of which 3/4 was already earmarked for on-going research. In order
to "free up" more money for novel research, an across the board 15% reduction
in funding to all ongoing researchers was initiated.....an unavoidable
True, a major portion of the portfolio IS slated for "cure", but as long
as the "lay committee" component of JDRF has a "voice", we will not allow
those aspects you mentioned to be ignored. A thorough & detailed survey of
other funding agencies, pharmaceutical companies, technology companies etc.
factored into decisions NOT to allocate limited dollars to things like
closed-loop studies. Over 80 people have now had islet transplants. IF (big
IF) a major immunological breakthrough were to occur tomorrow, making those
transplants truly "ready for prime time", we would all be VERY grateful for
JDRF having had the foresight to establish "centers" capable of doing these
procedures in multiple venues. Timing is a crucial factor in the viability of
the islets for the transplants, ergo being geographically near a center may
one day be very important.
Lastly ( and then I'll hop off the soapbox), we constantly "nag" the JDRF
organization to pay heed to what we all live with 24/7 - that nagging
resulted in the highly successful Bag of Hope program for newly diagnosed &
the recent addition of an age-appropriate Teen Pak. Improvements to the
existing website, which will make it more "user-friendly" for families
seeking help, are also being formulated.
I have long believed that, even while raising dollars for "cure
research", organizations like JDRF must also strive to offset the rampant
ignorance & misperceptions about life with diabetes TODAY, and to provide the
"tools" for families to optimize their loved ones' diabetes care. Knowing how
vocal I am about the importance of microalbuminuria screening, JDRF asked me
to represent them recently at an NIH meeting of the NKDEP- the national
kidney disease education program. I introduced myself to the roomful of
kidney experts as saying" I'm here from JDRF, representing all the hundreds
of thousands of children with diabetes whom I hope you NEVER meet in your
offices & clinics"!! Enough said!!
Renee (Melissa's pump mom)
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