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[IP] JDF Conference Report (long - but a MUST read)
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....
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
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…..
Insulin-Pumpers website http://www.bizsystems.com/Diabetes/
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