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



Thanks for posting this. Obviously a "cure" is the ultimate solution... but
I'm, pessimistically not holding my breath. Even with a real cure, I
suspect many of the complications that have already started won't instantly
go away. It's hard to undo what has already been done. But, I'm really
happy that it looks like some things are going in the right direction. I'll
keep my fingers & toes crossed.

Sam
(diabetic for 19 1/2 years and pumping for 1 day... click... click...
click....)

At 06/08/1998 - 06:16 AM email @ redacted wrote:
>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
> filmed.
>    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
> things:
>
>
>    
>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
> packaging…..
>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-
> away"!!!!!….
>
>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 
>
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