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[IP] JDF Conference Report (long - but a MUST read)

Greetings all:
    Ok - I have FINALLY gotten through the 240 e-mails that were awaiting me
 (haven't even DARED to tackle the 1018 posts at the Breast Cancer board!!
 LOL)...And once again, I find myself in serendipitous circumstances....Just
 when this gang's been tossing around that old "hot potato" of "life with
 diabetes sucks VS. life with diabetes on a pump is wonderful"for the past 4
 days, I am thrilled to be able to give you all an additional infusion today:
 an infusion of incredible HOPE!!!!!!!...I'm cutting & pasting my conference
 report that went to my cyber-pals yesterday ( when my enthusiasm was still on
 an "adrenalin high") but I'm adding an additional note before I begin, because
 it addresses so much of what I read this morning in posts from Randall,
 Darrin, Sam, Buddy, my cyber-pal Sara and many others....
      The renowned researcher, Dr. John Todd, from Oxford University spoke at
 length about the issue of complications.  Among many other areas, he's
 focusing on WHY someone who's had diabetes for decades & basically been non-
 compliant winds up with ZERO complications, whereas an extremely compliant
 diabetic can encounter problems fairly early on.  The answer lies in gene
 research, auto-immune functions, T-cell mechanisms, etc.  He & his colleagues
 know that T-cells come in 2 varieties : the "good guys" who wipe out nasty
 diseases and the "bad guys" that don't know when to quit, and malevolently
 pursue previously healthy organs. Listening to him made me realize that
 Melissa's kidney problems ( major proteinuria for those of you who aren't
 familiar with THAT lengthy saga) are probably yet another manifestation of her
 over-active auto-immune "bad guys" at work.  The ACE inhibitors which research
 has shown to be VERY effective in ameliorating this deterioration are however
 only a "tool" in fighting this extraordinarily complex auto-immune process.
 Guilt, anger, self-recriminations, etc are all very real emotional reactions
 to what is essentially a "luck of the draw" physiological occurence....To
 quote JDF, the ONLY remedy is a CURE!!!!!!!....and thanks to dedicated,
 compassionate, determined men like John Todd, and the now BURGEONING research
 telling all these great minds that islet cell transplants ARE most definitely
 the pathway to pursue, I can actually allow myself to believe that diabetes
 WILL be cured someday....not "tolerated"....So please take the time to read my
 lengthy report..If you want more details, especially about the scientific
 research efforts (such as the fact that JDF just authorized the opening of yet
 another two JDF-funded research centers concentrating on islet cells at
 Harvard and another site I can't recall) check out www.jdfcure.org where the
 detailed conference reports should be available shortly....
      Dear Cyber-circle:
      I’m thrilled to be able to report to all of you, who have a vested
 interest in diabetes, on this past week’s annual Juvenile Diabetes Foundation
 Conference. Not only was there tangible "electricity" in the air about the
 prospects for islet cell transplantation TRULY effecting a CURE in the future-
 but equally significant was the full-fledged commitment by JDF to reaching
 that goal as soon as possible…
    Probably all of you know that my family and I have become increasingly
 involved with JDF, primarily through the annual WALK to CURE DIABETES.  This
 conference in Washington DC afforded me however an opportunity to see "up
 close & personal" where all those thousands of dollars Melissa raised actually
 went  & who the "behind the scenes" decision-makers are…..and know what?..I
 really, REALLY , REALLY liked what I saw & heard!!!!
    Despite feeling that I was often "defending" JDF to non-members who
 questioned how those dollars were being allocated, I remained involved &
 committed because this organization "seemed" to me to be the most likely to
 help my child…After what I witnessed Wednesday through Sunday, I KNOW it is!!!
 Why the change of heart??? Because both as a parent and as a teacher, I always
 believed that the most courageous thing one can do is to ADMIT when one has
 made a mistake.
     JDF has in effect acknowledged that the "job" wasn’t getting done, and
 wisely requested input from outside "experts" to guide their efforts to yield
 tangible RESULTS!! Ad agencies provided (free of charge!!) public opinion
 polls that showed an appallingly high public Unawareness of JDF’s purpose.
 Equally disquieting was the general public’s perception that diabetes isn’t
 really a very serious disease since insulin allows our kids to live completely
 normal lives!!!! DUH!  A research task force solicited & then closely
 scrutinized ALL existing research underway world-wide to hone in on the most
 promising prospects. Experts in communications, information systems,
 government relations, marketing, etc. all contributed to this in-depth
 analysis, aimed at enabling JDF to cross over into these "New Frontiers" ( the
 conference theme).
    The results are nothing short of PHENOMENAL!!! Aggressive marketing forays
 resulted in alliances such as the one with Northwest Airlines, which not only
 is currently promoting JDF via an in-flight video spot, but also sponsored a
 fantastic print media campaign.  Hopefully you all saw the full page ad in
 USA Today last week which showed a boy at the beach with the headline" School
 may be out for the summer but he still has to take 5 tests a day."
 Informational brochures were re-designed & updated to provide the most
 credible, current approaches to handling diabetes & its potential
 complications.  New 10,15, and 30 second public service announcements
 featuring spokesperson Mary Tyler Moore, speaking on behalf of JDF, were
    Of definite importance to you who are reading your e-mail, the entire
 "Informational Systems" component of JDF has been reformatted.  A "state of
 the art" Internet and Intranet system is being put into place which will
 enable a newly diagnosed family to obtain HELP immediately. Updated websites,
 detailing governmental decisions which could impact on our children’s care
 (i.e. medical insurance improvements) or simply directing an inquiry to a
 local chapter or informing interested parties about JDF events in your region
 would be accessible.
    JDF has been cited as one of the top 10 most efficient non-profit
 organizations, giving approximately 83% of EVERY DOLLAR RAISED to research.
 Nonetheless, this introspective process also closely examined that domain too.
 New "accountability" mechanisms were adopted, so that researchers, funded
 through JDF research grants, would be expected to "produce" if their grants
 were to be renewed.  A renowned researcher from Oxford University addressed
 the conference, detailing his overview of what is necessitated to effect a
 cure, and bluntly stated that MONEY is also an integral component in the
 process.  In order for him to hire the "best & the brightest" recent PhD
 scientists, he has to be able to offer them a salary commensurate with their
 expertise. He spoke at length about the auto-immune process which destroyed
 our children’s pancreases (pancreaii????) & how scientists are honing in on T-
 cells - both "good & bad"- as a means of understanding not only what ALREADY
 happened to our children, but also how to stave off deterioration of other
 organs in the future….research which would impact on auto-immune diseases like
 asthma, rheumatoid arthritis, thyroid disorders, lupus, etc. 
     So what does all of this actually mean???? For me personally, it meant
 that although my daughter always says "there’s going to be a cure, Mom"…I’m
 not sure I really, really believed that…..
     But after spending 4 days in the company of these dedicated, committed
 men and women whose lives have been irreparably impacted by diabetes, I can
 NOW say "I BELIEVE, I BELIEVE"….The answers exist; what doesn’t yet exist is
 sufficient funding for the requisite clinical trials to prove this at a human
 level.  What I observed was the transformation of JDF from a "kitchen cabinet"
 literally inaugurated by a desperate mom around her kitchen table 28 years ago
 to a "well-oiled machine".  By applying the techniques which "big business"
 employs to an already successful non-profit organization, JDF intends to
 catapult itself into those "New Frontiers", where tangible results aren’t just
 a remote "maybe."
     And yet,  I was also sadly disheartened by stories I heard from parents
 about the level of care their children were receiving.  One mom told me her 14
 yr old daughter’s endocrinologist said her child’s A1C of 12 was pretty normal
 & to be expected for a teen-aged girl!!! Another had a daughter with protein
 levels in her urine rivaling those that my daughter had, yet the doctor felt
 an ACE inhibitor would make her blood pressure go too low, so he wouldn’t even
 recommend it. What I heard too much of was a lack of "partnerships" between
 the parents and their children’s doctors.  Diabetes is an insidious disease
 that erodes from the inside out & having already subjected my daughter to an
 invasive kidney biopsy, I DO NOT say that phrase cavalierly.
     So……….what’s my final message in this long-winded dissertation?…Two

1)  if there is a JDF chapter in your region, GET INVOLVED!!!!!!  This
 organization really, really "GETS IT" as far as what we all need for our
 kids….Participate in the WALK, reach out to new families, join support groups,
 stuff envelopes even!!!

2)  via your on-line efforts, continue to EMPOWER other parents…give them
 "permission" that society doesn’t readily give them to CHALLENGE, to QUESTION
 their child’s physician….Although we may not always want to hear the answers,
 in this scenario, I know that IGNORANCE is NOT bliss!!!

   And FINALLY, since I know how you  all love being "the first on your block"
 to know about new things……The Precision QID meter  is now available in 4 "HOT"
 CLEAR colored cases that actually show the "insides" of the meter….I would
 have ordered one but we already have 2 of the standard grey ones!!!…But they
 were so adorable!!!…I don’t recommend this as a primary meter, but if I had a
 younger child, I’d consider it as a "school meter" if only for the fact that
 other kids would think it was so "cool"!!!! ….And this particular company,
 like Fifty-Fifty, donates a portion of its profits to JDF, as stated on the
Lifescan was also at the conference touting their Fast Take, but I never got a
 chance to chat with their rep….Did spend a lot of time talking to the Minimed
 pump people from California though…They’re apparently preparing a new video
 designed to appeal to kids ( something about the Pump Girls????-  maybe they
 could hire the Spice Girl who left the group!!!)….Also brought home "Rufus the
 Diabetes Bear" which was designed by a mom of a diabetic child..Sells for
 about $25 and there’s also a story book to accompany him ($10 maybe????)….Just
 mentioning him in case you ever see him advertised…He comes complete with a
 MedicAlert bracelet on his wrist & felt "patches" on his arms, legs & tummy
 (underneath his corduroy pants & his shirt) designed for kids to inject
 into…..I picked up every available vendor’s brochure, so if anyone has
 specific questions about anything, please e-mail me separately….
     Did you actually think I was done?????..NO WAY!!!

How’s this for incredible SERENDIPITY???????…..The JDF conference was at the
 Marriott Hotel, 2 blocks from the Washington Monument……and guess what was held
 at the Washington Monument Saturday morning????….how about the RACE for the
 CURE to benefit breast cancer research!!!!!!…What were the odds of "my two on-
 line advocacies" coming together at the same moment?…So not only did I
 experience an unbelievably exciting, energizing diabetes conference, but I
 also got to be among the 51,000 participants in the Race for the Cure!!!…Truly
 an amazing feeling!!!..I didn’t actually "run" since I think I was the ONLY
 person out of 51,000 NOT wearing sneakers, but I did get my "I’m a Survivor"
 hat & button…..And still made it back to the conference in time to hear the
 concluding researcher’s speech!!! Phew!!!….I need a vacation from my "get-

NOW I’m really done!!!…Thanks for taking the time to read all of this..I’ hope
 I’ve managed to impart SOME of my enthusiasm & optimism…..

love, Renee 

Insulin-Pumpers website http://www.bizsystems.com/Diabetes/
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