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Re: [IP] JDRF Conference (long)

WARNING: yet another l-o-n-g one, may want to print this out!
    The JDRF conference was held this weekend at the Hilton Chicago & it was 
geared to chapter officers, staff, volunteers etc. I'm the incoming president 
of the Phila chapter, but have attended the past 3 years too as a volunteer, 
and highly recommend it. Not only did we hear exciting scientific updates, 
but a major portion of the 3 days was devoted to open sharing among chapters 
about their most successful fund-raising ideas, underscoring the 
"Collaboration" theme responsible for the astounding scientific progress over 
the past few years. The highlight of last year's conference was hearing Dr 
James Shapiro present his Edmonton protocol success with 8 patients. There 
are now 18 patients, of whom 16 are no longer diabetic, with the remaining 
two requiring only 1/5 of the insulin they had needed prior to their islet 
cell transplantation. The highlight of this year's conference was actually 
hearing Nicki, one of the recipients of his approach, speak to us about being 
INSULIN IN-DEPENDENT after 20 years of diabetes. There weren't too many dry 
eyes among the 600 participants, as this 32 yr old mother of 2 spoke of car 
accidents, of her children having to tell her to check her bgs because of her 
weird behavior, of her husband being afraid to fall asleep because her 
complete hypoglycemic unawareness had so adversely compromised her life, of 
her chemistry students having to monitor her actions when she was working 
with chemicals, etc. She acknowledged that as difficult as it is to explain 
diabetes to a non-diabetic, she's finding it infinitely harder to explain to 
a diabetic what it's like for her to no longer be diabetic!!! Yes, she takes 
immunosuppressants since she had her islet cell transplant at the Univ of 
Minnesota last August, but so far she's had no side effects. The 
"possibility" that there could be latent effects in the future appears to 
have no impact whatsoever on her sheer unadulterated joy at being able to 
live her life NOW to the fullest! The 10 centers that will be replicating the 
Edmonton protocol are all hoping to begin their trials by the end of this 
year, having culled the 1200 applicants down to 40. The goal is to have an 
additional 10 centers in operation eventually, since ideally, in order for 
Dr. Shapiro's approach to succeed, there is ONLY a 4 hour window between 
retrieval of the pancreas from the deceased donor, to isolation of the 2% of 
the whole pancreas that is required for islet transplants, to infusion of 
FRESH (not frozen) islets into the liver, via the portal vein.
   These are truly exciting times for progress towards a CURE...but until it 
is widely available, the goal of everyone living with diabetes TODAY is to 
optimize his/her success in battling the "diabeastie" on a day to day basis. 
It was also VERY exciting for me to hear how many of the 600 in attendance 
were either pumpers themselves, or parents of pumpers, compared to my first 
conference in 1998, when we Pump Prostelytizers were few & far between!!! I 
was equally elated by the agenda that devoted Saturday afternoon to sessions 
on School Issues, Teenagers and Factoring Exercise into diabetes care. 
Melissa's CDE, Gary Scheiner, was one of several panelists for the last 
workshop. And yet another highlight was hearing about JDRF-International 
chapters' successes. One mom from JDRF-Israel had been so impressed at last 
year's conference by hearing about the 1999 Children's Congress, that she 
flew home determined to institute a comparable program in the Israeli 
Knesset. In December 2000, 300 children appeared before their government 
officials & were so persuasive that the results included a) the government 
agreeing to finance insulin pumps for those desirous of that technology, b) a 
school initiative designed to dispel myths & misconceptions & insure 
better/appropriate care for children with diabetes in school and c) a 
collaboration with Dr. James Shapiro to create a beta cell transplantation 
center in Israel. Yet another poignant example of the power of a parent's 
passion to "make a difference"!! We also heard that Russ Berrie, the 
philanthropic head of the Russ company that makes "Rufus the diabetes bear", 
will now be making extra bears to be sold in hospital gift shops everywhere.
       As for Chicago, I never even got to see the LAKE! I walked into the 
hotel at 1:00 Thursday afternoon & re-emerged at 8:00 a.m. Sunday to fly 
home, exhausted from 3 days of non-stop JDRF sessions!! For me and my family, 
this is truly our labor of love on behalf of Melissa and everyone who has to 
contend with role-playing "in loco pancreas"!!!! 
Regards, Renee (Melissa's pump mom/advocate)
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