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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 
economic reality.
     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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