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  Back to Chat Chat with Dr. Camillo Ricordi

Dr. Camillo Ricordi, Scientific Director and Chief Academic Officer of the Diabetes Research Institute and Stacy Joy Goodman Professor of Surgery and Medicine and Chief of the Division of Cellular Transplantation at the University of Miami School of Medicine, joined us for a special chat about islet transplantation and research into a cure for type 1 diabetes.

Moderator  Tue May 20 08:00:00 PM EDT 2003
Our chat with Dr. Ricordi starts at 9pm Eastern.


Jeff Hitchcock   (216.68.227.14) Tue May 20 08:44:55 PM EDT 2003
Good evening everyone

TC   (203.200.95.130) Tue May 20 08:47:24 PM EDT 2003
Hi...

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 08:55:37 PM EDT 2003
Hi again. Anyone here yet?

TC   (203.200.95.130) Tue May 20 08:56:58 PM EDT 2003
Yup ...

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 08:57:17 PM EDT 2003
TC, do you have diabetes?

Sonia mom of Lilia 5 dx'd at 21 months  (66.214.123.175) Tue May 20 08:57:21 PM EDT 2003
Ji jeff everyone is on parents online

TC   (203.200.95.130) Tue May 20 08:58:22 PM EDT 2003
T1 for the past 9 yrs . I'm 22 right now

Rick (MO) Grant's Dad, 6, dx'd @ 5  (68.86.90.240) Tue May 20 08:58:54 PM EDT 2003
hi  Smile 

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 08:59:16 PM EDT 2003
TC ... my daughter Marissa is going in her 14th year with diabetes. Looking forward to a cure.

Ellen (FL) Zack 15,  (152.163.253.71) Tue May 20 09:01:23 PM EDT 2003
Hi.

jeff   (216.26.26.150) Tue May 20 09:01:44 PM EDT 2003
 Grin 

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:02:22 PM EDT 2003
Good evening Ellen. How's things in Florida?

Ellen (FL) Zack 15,  (152.163.253.71) Tue May 20 09:02:45 PM EDT 2003
I'll second your sentiments Jeff. My son was diagnosed over 14 years ago. The first other parent with a child with diabetes I met was Barbara Singer from the DRI.

Heather dx'ed 7 mths ago  (69.42.35.103) Tue May 20 09:02:51 PM EDT 2003
Hey everybody

TC   (203.200.95.130) Tue May 20 09:02:57 PM EDT 2003
Jeff , are you also diabetic ?

Ellen (FL) Zack 15,  (152.163.253.71) Tue May 20 09:03:09 PM EDT 2003
Things are HOT  LOL .

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:03:27 PM EDT 2003
TC ... I don't have diabetes. Only Marissa does in our family.

jeff   (216.26.26.150) Tue May 20 09:03:57 PM EDT 2003
i am, which jeff?

jeff the other jeff  (216.26.26.150) Tue May 20 09:04:33 PM EDT 2003
 Smile 

Heather dx'ed 7 mths ago  (69.42.35.103) Tue May 20 09:04:42 PM EDT 2003
how ya'll doin?

jeff the other jeff  (216.26.26.150) Tue May 20 09:05:38 PM EDT 2003
fine Heather , how are you. what type are you?

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:05:48 PM EDT 2003
soggy here in Cincinnati ... way, way too much rain.

TC   (203.200.95.130) Tue May 20 09:05:56 PM EDT 2003
Do you have any idea how she got it . With me this runs in both my parent's families .

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:06:05 PM EDT 2003
Hello everyone

Camillo Ricordi   (129.171.137.81) Tue May 20 09:06:37 PM EDT 2003
I am not sure I logged in the right way ... but here I am ... Hi

Sonia mom of Lilia 5 dx'd at 21 months  (66.214.123.175) Tue May 20 09:06:38 PM EDT 2003
hola everyone Smile 

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:06:41 PM EDT 2003
Soggy in the Louisville area too.....

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:06:50 PM EDT 2003
I'd like to welcome Dr. Camillo Ricordi from the Diabetes Research Institute, who is here tonight to talk about islet cell transplanation and other research being conducted at the DRI.

jeff the other jeff  (216.26.26.150) Tue May 20 09:06:57 PM EDT 2003
Hi Marisa

Heather dx'ed 7 mths ago  (69.42.35.103) Tue May 20 09:07:01 PM EDT 2003
Hey (other) Jeff, I'm fine... type 1 here.. and u?

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:07:17 PM EDT 2003
Good evening, everyone! Hello, Dr. Ricordi - Thank you so much for being here tonight!

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:07:21 PM EDT 2003
Hi Dr. Ricordi...so glad you are a guest here tonight!!!

Tom a dad  (24.187.33.163) Tue May 20 09:08:08 PM EDT 2003
are we allowed to start questions?

Sonia mom of Lilia 5 dx'd at 21 months  (66.214.123.175) Tue May 20 09:08:11 PM EDT 2003
Hi Dr. Ricordi

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:08:22 PM EDT 2003
Ask away

TC   (203.200.95.130) Tue May 20 09:08:24 PM EDT 2003
You're kinda lucky Jeff, here it's 42 C in the day .

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:08:44 PM EDT 2003
Dr. Ricordi, thanks so much for all your wonderful work. Can you please discuss how we might hope to alter the immune response so that the body will not continue to destroy beta cells once a cure is found.

Camillo Ricordi   (129.171.137.81) Tue May 20 09:08:49 PM EDT 2003
HI, It is a pleasure and my first time here ... I believe ... I am still at the DRI, but I heard that there is the final of American Idol ...

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:09:03 PM EDT 2003
What's NEW in research towards the cure for type 1?

Rick (MO) Grant's Dad, 6, dx'd @ 5  (68.86.90.240) Tue May 20 09:09:37 PM EDT 2003
 Grin  welcome!

Tom a dad  (24.187.33.163) Tue May 20 09:09:40 PM EDT 2003
There was news recently about scientists able to create 'an egg' unfertilized--artificially---I know I do not have that right---but has Dr. Ricordi heard about this and what significance would it have if it were nit an actual human 'egg'?

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:09:49 PM EDT 2003
You're MY Italian Idol Dr. R.  LOL 

Camillo Ricordi   (129.171.137.81) Tue May 20 09:10:13 PM EDT 2003
The way we are trying to address that is by infusing a portion of the immune system of the donor (bone marrow derived stem cells) to re-educate the immune system of the recipient to accept the transplanted islets.

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:11:38 PM EDT 2003
So you are working along the same lines as Dr. Ilstad in Louisville - ie, mixed chimerism?

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:11:43 PM EDT 2003
Dr. R I seem to feel a real sense of really making progress from researchers lately (in the last four years). Do you think we have made more progress in the past few years than ever, and do you see that progressing quickly toward something even better?

TC   (203.200.95.130) Tue May 20 09:11:46 PM EDT 2003
Dr. R So no daily immunosuppresents after the cell transplant ?

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:11:53 PM EDT 2003
Is that working in large animal studies Dr. R?

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:12:16 PM EDT 2003
I understand that bone marrow may be used to stop rejection, but might it also reeducate the body to no longer attack the beta cells as it did in the first place to cause diabetes?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:12:34 PM EDT 2003
There are several ways to try to develop beta cells from immature precursors and one of them is this kind of embryonic stem cells from embryos that cannot fully differentiate, but it is still very preliminary ...

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:13:44 PM EDT 2003
Dr. Ricordi, I was wondering if there is a way for organ donors to specify that the pancreas should be taken first. I'd heard that if other organs are taken before the pancreas that it doesn't survive. Any comment?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:13:54 PM EDT 2003
Judith, Dr. Ildstad was my associate in Pittsburgh and we have been working along these lines for the last two decades ... it works in animals (as usual) but we are not at the clinical "miracle" yet ...

Tom a dad  (24.187.33.163) Tue May 20 09:14:04 PM EDT 2003
Did you hear about these doctors in New Zealand (i think) and Mexico---is there anything to the pigislets in kids?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:16:29 PM EDT 2003
Marisa (that's my mother name by the way ...), It is exactly the objective of these studies. In fact, if you can re-educate the immune system not to reject the islets and not to be self destructive against islets in general it would be conceivable to be able to generate new islets from the patient's own precursors without the need for an islet transplant all together ...

TC   (203.200.95.130) Tue May 20 09:16:49 PM EDT 2003
dr. R , Couldn't the docs develop some special plastic to envelop the cells and save them from the immune sys.

Camillo Ricordi   (129.171.137.81) Tue May 20 09:18:29 PM EDT 2003
We have been in contact with Dr. Valdes in Mexico and 2 from our team visited his center and reviewed the results. There is something interesting there ... interesting enough that we are going to collaborate with Valdes to test his device and cells in monkeys were it will be possible to perform all the necessary controls that they could not do in the clinical trial

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:18:52 PM EDT 2003
I'm honored to share the same name with your mother. My father is from the Catanzaro region of Italy. Scott was actually diagnosed in Italy when we were visiting.

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:19:16 PM EDT 2003
Well that IS very interesting Dr. Ricordi!

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:20:00 PM EDT 2003
What will it take to get to the clinical miracle?

Tom a dad  (24.187.33.163) Tue May 20 09:20:01 PM EDT 2003
Is this the same work in New Zealand--or is that a different--procedure/protocol/doctor? What is the differnce?

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:20:23 PM EDT 2003
How are those children doing, are they off insulin?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:20:55 PM EDT 2003
Jeff, There are several way to take the pancreas without damaging it. The main problem is not that the organ is not taken first, but is that it is not taken right, and often it is not cooled properly while waiting for the time of procurement. In the hands of expert surgeons (dedicated to the islet team - i.e., John Goss in Houston, TX) the pancreas can ba removed in excellent conditions most of the times ...

Camillo Ricordi   (129.171.137.81) Tue May 20 09:24:12 PM EDT 2003
Ellen, some of those children have significantly reduced insulin requirements and stable metabolic control ... I would have expected that there was no function at all and that without immunosuppression all the insulin producing cells would be destroyed in a few days. The fact that there are indications of a possible prolonged function of the porcine islets could imply a role from the sertoli cells that are co-transplanted and that could confer some protection ... and may be other positive effects on growth of new capillaries in the device

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:24:46 PM EDT 2003
wow that is encouraging

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:24:59 PM EDT 2003
Dr. Ricordi, how are the adults who have had successful islet transplants doing overall? Is the immunosuppressant regimen such that it would appropriate for younger people?

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:25:03 PM EDT 2003
Which do you think the U.S. Government will allow first: stem cell research to flourish or porcine islets to be implanted in humans? How vital do you feel stem cell research is in the process of finding a cure for diabetes?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:25:53 PM EDT 2003
TC, the "plastic envelop" concept has been attempted for decades ... and still there is a lot of research in this direction. The major concenr is that if you exclude islets from the circulation (blood supply of oxygen and nutrients) the islets have a tendency to degenerate over time ... even if you prevent rejection

Tom a dad  (24.187.33.163) Tue May 20 09:26:01 PM EDT 2003
They allowed pork insulin---how far off can the porcine islets be?

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:26:35 PM EDT 2003
Especially in light of the recent SARS epidemic, what do you think of the risks of transplantation from other species?

Tom a dad  (24.187.33.163) Tue May 20 09:26:45 PM EDT 2003
Oh I'm sorry---we are talking about the US Government...right? Rolling Eyes 

TC   (203.200.95.130) Tue May 20 09:28:26 PM EDT 2003
Even AIDS came to humans from the monkeys in Africa , right ?

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:29:08 PM EDT 2003
That's the theory, TC

Camillo Ricordi   (129.171.137.81) Tue May 20 09:29:25 PM EDT 2003
Jeff, the success rate is currently approximately 80% at one year post islet transplant and 70% at 2 years, but I do not believe that the current immunosuppression (i.e., Edmonton protocol) will be used for much longer, because there is still significant toxicity from this immunosuppression and this will limit the application to the most severe cases. I am confident that we will see much improved protocols (and less toxic) in the next year or so. Then we can discuss younger recipients.

Camillo Ricordi   (129.171.137.81) Tue May 20 09:30:32 PM EDT 2003
Porcine islets and stem cells ... i think they have the same chance right now ...

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.204.73) Tue May 20 09:30:38 PM EDT 2003
Besides work to cure diabetes, is the Diabetes Research Institute working on any protocol to prevent the onset of type 1 diabetes? Many of us worry about our other children also being diagnosed with diabetes and want prevention as much as a cure.

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:31:05 PM EDT 2003
Do these less toxic immunosuppression therapies involve new drugs? If so, are these drugs currently under development?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:31:20 PM EDT 2003
FDA would not oppose a controlled trial with pig islets, for what I can tell, if there are preliminary results in a relevant experimental model system... i.e. pig to monkey

TC   (203.200.95.130) Tue May 20 09:31:26 PM EDT 2003
Dr.R , Have any ways been found yet for people with diabetes to have children without passing on the disease ?

Tom a dad  (24.187.33.163) Tue May 20 09:32:24 PM EDT 2003
To add to what Ellen said---not only our other children---but if something does works---won't we need to make sure they don't 'get it' all over again?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:33:23 PM EDT 2003
Ellen, the same protocols that are developed to prevent destruction of islets after transplantation and induce tolerance (restoring self-tolerance to avoid autoimmune destruction of the transplanted islets) could be applied to prevent diabetes altogether or block it at the very beginning, before there is significant destruction of insulin producing cells.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:33:32 PM EDT 2003
Dr. Ricordi, my son Sam is 13 and has had type 1 for 5 years. He is not always very optimistic about 'the cure' being in his lifetime, although he certainly takes great care of himself and is under good control (last A1c of 6.8). What would you say to him to give him optimism for the future?

Tom a dad  (24.187.33.163) Tue May 20 09:33:33 PM EDT 2003
With taht in mind---they age old question comes up----if we have a child with doabetes--what are the odds of a sibling getting it and is diabetes type 1 hereditary---or not?

Tom a dad  (24.187.33.163) Tue May 20 09:34:17 PM EDT 2003
sorry about the spelling errors---

Clare Rosenfeld 16 yrs. old, dx 93  (67.250.105.105) Tue May 20 09:34:21 PM EDT 2003
Dr. Ricordi, if you had one piece of encouragement for those of us with diabetes who are still under 20, what would it be?

Camillo Ricordi   (129.171.137.81) Tue May 20 09:34:40 PM EDT 2003
TC, not that I know ... and 95% of new cases of diabetes are in families without any history of diabetes ...

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 09:35:00 PM EDT 2003
Tom, my mother is type 1 and my son is type 1, and I've been given a 8-12% chance that my daughter will also develop type 1.

Tom a dad  (24.187.33.163) Tue May 20 09:36:06 PM EDT 2003
Allison--I respect that but is it scientifically proven that it is passed on and you are just very unfortunate?

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:36:28 PM EDT 2003
Hi Clare - You and Sam are of one mind tonight! That's what he would like to know as well.  Smile 

Camillo Ricordi   (129.171.137.81) Tue May 20 09:36:32 PM EDT 2003
B. I would tell Sam that the progress in the last three years in islet transplantation has been greater than the progress in the preceding three decades ... and that there is serious reason for optimism!

Tom a dad  (24.187.33.163) Tue May 20 09:36:36 PM EDT 2003
I mean no one has it in our family---no one---so what isthe 'norm'?

TC   (203.200.95.130) Tue May 20 09:37:10 PM EDT 2003
That's usually T2 isn't it . All I've heard is that T1 is got through the genes

m'chel Jake, 9, dxd 2/03  (64.4.227.2) Tue May 20 09:37:17 PM EDT 2003
no one in my family or my husband's had it either

Tom a dad  (24.187.33.163) Tue May 20 09:38:17 PM EDT 2003
comment please Dr. Ricordi---

Camillo Ricordi   (129.171.137.81) Tue May 20 09:38:19 PM EDT 2003
For those of you under 20, my message would be that you will celebrate your 30th birthday without diabetes ... (I really think the 25th, but they always tell me I am too optimist)

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:38:20 PM EDT 2003
no history here either

Tom a dad  (24.187.33.163) Tue May 20 09:38:33 PM EDT 2003
on hereditary

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:38:49 PM EDT 2003
Dr. Ricordi - I certainly came away from last Fall's DRI update feeling more confident than ever... however some days it is difficult to transfer that feeling to a teen who has to deal with it day in and day out. I think for the most part, our kids try to be optimistic, but some days are very hard. And some are truly an uphill battle. Every piece of optimistic news should be shared with them.

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:39:19 PM EDT 2003
No family history here either of Type 1 - but strong background of Type 2 in older adults

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:39:41 PM EDT 2003
Sam is clapping in the next room...

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:39:41 PM EDT 2003
Dr. Ricordi ... that's great news for people like my daughter Marissa who will be 16 in August. I've always told her that she will see a cure, and I am more optimistic than I have ever been.

Clare Rosenfeld 16 yrs. old, dx 93  (67.250.105.105) Tue May 20 09:39:54 PM EDT 2003
Thank you Dr. Ricordi, Laura, let's start planning the party!  LOL  This is great encouragement for us to take good care of ourselves.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:40:33 PM EDT 2003
When Sam was dx'd, we went back to my adoption records (I was adopted as an infant). The agency found that my birth mother's brother died from type 1 at age 15 (in the 50's). So it's clearly in my family.

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:41:07 PM EDT 2003
Dr R, I've just shared that good news with my son, who is 17, in his 18th year of living with diabetes.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:41:11 PM EDT 2003
Dr. Ricordi, when you all discover the cure, CWD is going to rent the Disney Cruise Ship Celebration... and we're going to have a huge party. (with lots of cake)

Camillo Ricordi   (129.171.137.81) Tue May 20 09:41:18 PM EDT 2003
Tom, The large majority of new cases appear in families with no previous history of diabetes, but this is still a very low frequency. If you do have a parent or sibling with type 1 there is definitely a higher chance to have a child diagnosed.

Tom a dad  (24.187.33.163) Tue May 20 09:41:19 PM EDT 2003
Again-I ask about the hereditary question----is it or isn't?

Tom a dad  (24.187.33.163) Tue May 20 09:41:41 PM EDT 2003
Thank you Dr. Ricordi

TC   (203.200.95.130) Tue May 20 09:41:54 PM EDT 2003
Ok Clare , and no diet food in this one Grin 

Camillo Ricordi   (129.171.137.81) Tue May 20 09:42:27 PM EDT 2003
Tom, did I answered sufficiently?

m'chel Jake, 9, dxd 2/03  (64.4.227.2) Tue May 20 09:42:40 PM EDT 2003
that is one cruise/party I will be at!

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:43:08 PM EDT 2003
What do you see as a possible timetable for the implementation of a cure - ie how long from bench to genearl availability?

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:43:16 PM EDT 2003
I so appreciate that you have brought researchers worldwide together to figure out how to cure this disease. It's not going to happen with one single discovery. I hope you're right about the next 10 years Dr. R. and I will continue my loyal support of the DRI, I have to admit I stay very cautiously optimisitc. we have heard 5-10 for a long time now. I'd be very happy for my son to achieve euglycemia.

Sunshine Brent's mom (dx'd 5/03) 13  (205.188.208.11) Tue May 20 09:43:23 PM EDT 2003
encouraging news, Dr. Ricordi...thank you!

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:43:26 PM EDT 2003
I do look forward to the annual CWD conference being a huge cure party.

TC   (203.200.95.130) Tue May 20 09:43:31 PM EDT 2003
Judith , 17 and in his 18th yr of T1. This deserves some research in NASA .

Rick (MO) Grant's Dad, 6, dx'd @ 5  (68.86.90.240) Tue May 20 09:43:49 PM EDT 2003
Dr. R, what can we do, with having so much at stake, to help support your causes? Organizations? Gov't Agency's? etc?

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:43:52 PM EDT 2003
The math DOES work, TC

Camillo Ricordi   (129.171.137.81) Tue May 20 09:43:56 PM EDT 2003
I prefere the cruise idea ...

Tom a dad  (24.187.33.163) Tue May 20 09:44:13 PM EDT 2003
Yes, Thank you. Dr. Ricordi---it is my understanding that you are truly respected in this field---I know you know what you have just told this group----why are you so sure, if I may ask? This is a very bold statement and will be repeated again---you do stand behind that?

Tom a dad  (24.187.33.163) Tue May 20 09:44:32 PM EDT 2003
WOW!

ms   (205.188.208.11) Tue May 20 09:44:49 PM EDT 2003
Hi all. Trying to read back and catch up  Grin 

Clare Rosenfeld 16 yrs. old, dx 93  (67.250.105.105) Tue May 20 09:44:51 PM EDT 2003
I must go now, thank you so much for your inspiration and hard work. We hope to meet you at one of the CWD events!

Sai Dad of Sai, 4, dxd at 1  (24.165.152.159) Tue May 20 09:44:53 PM EDT 2003
Any optimistic news from companies that are working on artificial pancreas and continuous display of BG readings(Other than Cygnus).

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:44:55 PM EDT 2003
Good. You are the Keynote Speaker! Let me know when it's time to reserve the ship...

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 09:44:56 PM EDT 2003
I'd spring for a suite on that cruise!

Tom a dad  (24.187.33.163) Tue May 20 09:45:16 PM EDT 2003
We have been told about a cure for 20 years---for a researcher of your magnitude---this is enormous to us.

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:45:20 PM EDT 2003
Heck I'll pay for the whole cruise

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:46:10 PM EDT 2003
I'm saving THAT post, Moira!  Grin 

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:46:28 PM EDT 2003
Not a worry Judith, it would be worth it

m'chel Jake, 9, dxd 2/03  (64.4.227.2) Tue May 20 09:46:53 PM EDT 2003
I've got to go, too. Feed, insulin, baseball tonight.

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:46:54 PM EDT 2003
once there's a cure, I'll feel comfortable leaving CWD and going out on a boat.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:47:16 PM EDT 2003
I've got it, too. It's going in the CWD archives.
Tom, great question. Why are you so sure NOW, Dr. Ricordi? What has made the difference?

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:47:26 PM EDT 2003
Dr. Ricordi, how many adults have had islet transplants so far using the Edmonton Protocol?

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:48:05 PM EDT 2003
I have a good friend who got the islet transplat. she is doing wond4erfully but calls this time her "vacation from diabetes" she's a peach . . . .

Sonia mom of Lilia 5 dx'd at 21 months  (66.214.123.175) Tue May 20 09:48:07 PM EDT 2003
Dr.R you are saying is that when my daughter is 25 or 30 she wont be Diabetic

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:48:22 PM EDT 2003
Do you feel the cure will involve genetic manipulation? Right now there aren't enough human islets...do you think people will be infused with engineered islets?

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 09:48:27 PM EDT 2003
Then you can start "Children Without Diabetes," Jeff. Grin 

TC   (203.200.95.130) Tue May 20 09:48:49 PM EDT 2003
Dr. R , Could you tell me about some site where I could ask the researchers about the genetics of this illness

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 09:48:57 PM EDT 2003
Sonia, he's saying by the time Lilia can drive, she probably won't be d.

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:48:59 PM EDT 2003
Once *'m done with this I'm working toward a cure for ADOLESCENCE!!!!!!!!!!!!!!

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:49:09 PM EDT 2003
Jeff, give it up. You will never be comfortable on a boat. We'll have to rename our group "Parents Looking For Something Else To Worry About." I'll have to think of a good acronym. I can run those conferences.

Tom a dad  (24.187.33.163) Tue May 20 09:49:42 PM EDT 2003
PLFSETWA---what is the matter with that?

Sonia mom of Lilia 5 dx'd at 21 months  (66.214.123.175) Tue May 20 09:49:49 PM EDT 2003
yeahhhhhh Smile  Smile 

Camillo Ricordi   (129.171.137.81) Tue May 20 09:50:08 PM EDT 2003
The progress of research to cure a disease is not linear. If you take islet transplantation before rapamycin ws introduced the success rate was less than 10% and within one year it bumped to over 80% ... now we have to do it with less immunosuppression and eventually without chronic immunosuppression alltogether. That will be the cure. At the same time we'll have to develop unlimited sources of insulin producing tissue so that we can treat all once we have the solution ... I am confident that this is all within our reach and I will stand behind that! I also thought we were 5 years away from a cure when I started working in islet research in 1982 ... so, I have been wrong before, but we do work with the enthusiasm and the intensity and the commitment as every next step could be the one. I could not work othewrwise and if I would not be convinced that a cure is within reach, I would not work these hours ...

ms   (205.188.208.11) Tue May 20 09:50:21 PM EDT 2003
Dr. R, out of curiosity, who do you feel would be the first recipients of "the cure"? Would it be those who are void of complications? those who are younger? older? duration with diabetes?

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:50:35 PM EDT 2003
Someone was asking about continuous glucose monitoring. TheraSense has a new continuous sensor. Not yet approved, but well into development. There is information about it on their website. I've seen it. Very interesting.

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:50:39 PM EDT 2003
Dr. Ricordi, I would like to hear an answer to the question asking what can we do to help support your causes other than the obvious to help fund your research? What should we be lobbying for? What can we do to help?

Tom a dad  (24.187.33.163) Tue May 20 09:51:14 PM EDT 2003
What conferences?
I'm fairly new....

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:51:46 PM EDT 2003
Tom - check out... www.childrenwithdiabetes.com/activities

Lots of conferences.  Smile 

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 09:52:04 PM EDT 2003
Check out the top right of your screen, Tom -- "Friends for Life Conference Orlando 2003."

TC   (203.200.95.130) Tue May 20 09:52:08 PM EDT 2003
Gotta go . Thanks Dr. R

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:52:17 PM EDT 2003
Tom, Disney World, Orlando, July 9-12 ... join us.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:52:53 PM EDT 2003
ms, that's a great question. I always tell Sam to take great care of his body because when the cure comes, he will want to be healthy and strong to "be cured" and move on.

Camillo Ricordi   (129.171.137.81) Tue May 20 09:52:57 PM EDT 2003
TC, you can invitre Dr. Alberto Pugliese to be a guest in this chat (apuglies (at) med.miami.edu). He is the head of immunogenetics at the DRI and can answer all your questions ... including protective genes like the 602 and predisposing genes and how much probability you can have to develop diabetes if you have a match of selected markers etc. I prefer to talk about how we are going to cure it ...

ms   (205.188.208.11) Tue May 20 09:54:01 PM EDT 2003
Dr. your devotion is much appreciated. I think that some of us seem to be a bit skeptical only due to hearing of a cure for so long - I have had diabetes since age 4 and remember growing up hearing that a cure was around the corner. I do think we are closer, but at times wonder just how close. Support, I agreee, is much needed as is belief!

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:54:15 PM EDT 2003
For anyone interested, at the Orlando conference, there will be a DRI Research Update by Dr. Fenjves. Very much looking forward to that session!

Tom a dad  (24.187.33.163) Tue May 20 09:54:24 PM EDT 2003
Marissa---your..."the obvious" is not as ovious as you think---if more people/organizations supported the efforts of those making a differenc and not merely to 'run a party' or duplicate work being done-----this man seems like he needs to be funded. Is he getting enogh--I don't know---but there is a lot of wasted money going around........lobbying????? for what---the man just said he is moving us ahead and by time our children are 30 they would be cured------I have just looked to take a mortgage against my house---and I am serious-----how much Dr. Ricordi? How much do you need?

Tom a dad  (24.187.33.163) Tue May 20 09:54:50 PM EDT 2003
I really cannot spell tonight--I am sorry.

Camillo Ricordi   (129.171.137.81) Tue May 20 09:54:54 PM EDT 2003
MS, the first recipient of the cure will be the first one on the waiting list for it ... once we know it will be a cure it will most likely be offered to the more severe cases, if there are restrictions limited availability ...

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:55:21 PM EDT 2003
What breakthrough is needed at this point? Do you anticpate that a real cure will still involve immunosuppression in the short term?

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 09:56:00 PM EDT 2003
Jeff, please contact Dr. Pugliese for a chat. These chats with experts are wonderfully informative and encouraging.

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:56:37 PM EDT 2003
Reknowned stem cell researcher Doug Melton recentil said "We are close to a cure" to which his daughter who has D and is a teen said, "
Well dad, quit talking about it and do it!" LOL

Rick (MO) Grant's Dad, 6, dx'd @ 5  (68.86.90.240) Tue May 20 09:56:45 PM EDT 2003

Camillo Ricordi   (129.171.137.81) Tue May 20 09:56:51 PM EDT 2003
ms, I was sent to the US by my boss in Milan Italy in 1985 and was told to come back with the cure in 1 year or 2 ... but not to come back until I found it ... So I can relate (a little) to your frustration

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 09:57:09 PM EDT 2003
Allison ... I've already sent an e-mail  Smile 

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:57:21 PM EDT 2003
Since the current immunosuppression protocol is not likely to continue, what's next on the horizon for islet cell recipients?

Tom a dad  (24.187.33.163) Tue May 20 09:57:43 PM EDT 2003
Perhaps I sound like a crazed lunatic---but if this center is as the Doctor says---why would I want to be anywhere else---why would anyone? Is it just a matter of more money Dr. Ricordi?

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 09:58:03 PM EDT 2003
Dr. R... just curious. If an effective and safe closed loop system were developed and made available to regular people like us, would you equate that to 'a cure?'

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 09:58:43 PM EDT 2003
Can anyone tour your facility?

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 09:59:06 PM EDT 2003
I would not billet. just my humble opinion

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 09:59:20 PM EDT 2003
We really hope you can go home soon, Dr. R!  Grin 

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 09:59:26 PM EDT 2003
Laura, FWIW I certainly wouldn't consider that a cure.

Tom a dad  (24.187.33.163) Tue May 20 10:00:14 PM EDT 2003
I sthere an office anywhere in the North US?

Camillo Ricordi   (129.171.137.81) Tue May 20 10:00:27 PM EDT 2003
Doug Melton's daughter is right. My favourite slogan is "just cure it!", and hopefully there will be more centers adopting our translational research strategy and concentrating on relevant research that could have real implications to treat patients and not mice. The DRI has been a good start in this direction, and now we there is definitely a more general movement in this direction.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 10:00:33 PM EDT 2003
People's definitions of 'a cure' vary quite a bit. I'll bet there are some people who consider a closed loop enough of a cure to leave it at that. I, personally, don't btw. I was just curious what Dr. R. thought.

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:00:39 PM EDT 2003
Tom DRI does programs in NYC

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:01:11 PM EDT 2003
Camillo my daughters JDRF walk team slogan is "Got Islets?"  Wink 

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 10:01:39 PM EDT 2003
Tom, DRI is an exceptional place with exceptional people ... no doubt about it.

Camillo Ricordi   (129.171.137.81) Tue May 20 10:02:10 PM EDT 2003
Ellen, everyone can tour our facility and see how we believe we can make a difference. You can just loggin in www.drinet.org and contact us or e-mail me at ricordi (at) miami.edu and we will arrange the visit

Camillo Ricordi   (129.171.137.81) Tue May 20 10:02:33 PM EDT 2003
Moira, I have the hat ...

Camillo Ricordi   (129.171.137.81) Tue May 20 10:03:10 PM EDT 2003
We will have a research update in NY on October 25

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:03:16 PM EDT 2003
well my girl came up with that . . . I'm proud LOL

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:03:40 PM EDT 2003
and usually at the update there is babysitting by clara barton camp for kids with diabetes. great program

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 10:03:52 PM EDT 2003
The DRI Research Update in New York is a great way to learn about the science.

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 10:04:45 PM EDT 2003
CWD will be at that update! I'm hoping Sam can come this year and hear first-hand.

Tom a dad  (24.187.33.163) Tue May 20 10:04:48 PM EDT 2003
Who/ what is the contact?

Rick (MO) Grant's Dad, 6, dx'd @ 5  (68.86.90.240) Tue May 20 10:04:53 PM EDT 2003
i may have missed the answer but... what can we do to help? who should we be supporting or lobbying? as you can see, I am still pretty new at this

Camillo Ricordi   (129.171.137.81) Tue May 20 10:05:27 PM EDT 2003
I do not see a close loop as a cure, but it would be a good treatment. For a cure to be defined such I would want to see:
1. normal metabolism
2. without side effects
3. with prevention of long term complications and reversal of existing ones

I am not sure that insulin alone can achieve this, ewven with a close loop system

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:05:46 PM EDT 2003
Rick govt just approved $750 mill for type 1 over next few years. but they need to be pushed on stem cell BIG TIME and for more $$ for research

Tom a dad  (24.187.33.163) Tue May 20 10:05:54 PM EDT 2003
ditto.

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 10:06:39 PM EDT 2003
Rick, if you're looking to make a difference immediately, donations to the DRI are -- in my mind -- the best investment a parent can make in their child's future health.

Tom a dad  (24.187.33.163) Tue May 20 10:06:49 PM EDT 2003
Wll i fthey have 750--how much is the DRI getting? If it i snot the lion's share---what is the point in lobbying? who gets the check?

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 10:06:53 PM EDT 2003
But who makes sure the gov't dispenses the $$ to research other than simply curing more rodents of diabetes?

Billetdeaux Sam's mom (dx'd 8/98, 13)  (68.40.217.40) Tue May 20 10:06:59 PM EDT 2003
Duty calls... the kiddos are heading to bed. I'm on Mom Duty. G'night everyone. Thank you for being with us tonight, Dr. Ricordi! It really is a pleasure chatting with you!

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 10:07:03 PM EDT 2003
To date, are any transplanted islets functioning as "original equipment"? That is, producing glucagon, etc as well as insulin?

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:08:09 PM EDT 2003
Good point ellen, actually there are quite a few volunteer positions avaialble on NIH campus for oversight . ..

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:08:41 PM EDT 2003
my hope is that $$ can do some basics so brilliant folks like DRI can get all the other $$ to be amazingly innovative

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 10:09:05 PM EDT 2003
Do you feel more money would be allocated if there was a type 1 diabetes registry and the gov't had accurate figures of how many persons have type 1 diabetes in the US?

Camillo Ricordi   (129.171.137.81) Tue May 20 10:09:29 PM EDT 2003
Rick,

I would:
1. push govt for more support
2. support stem cell research
3. support utilization of pancreas for islet transplantation and ask all organ procurement organization to have mandatory procurement of pancreas in good conditions and without charging 25,000/pancreas
4. visit the researchers you are thinking to support directly and determine whether they can make a difference and if they have a unique approach, philosophy, and determination to do it.
5. doubling the budget is not enough if you do not change the way research is done !

Tom a dad  (24.187.33.163) Tue May 20 10:11:21 PM EDT 2003
Thank you Dr. Ricordi.

Camillo Ricordi   (129.171.137.81) Tue May 20 10:12:01 PM EDT 2003
My strategy is to have this institute (DRI) to work as an accelerator for any potential discovery towards a cure. I am convinced that the approach you have to a problem and the strategy you adopt is more important than the resources you have to get the job done ... of course you need $$$ ,but if you use them to study more and more about less and less, it would be a waste!

Maryann (michigan) mom of Jill, dx'd @11  (4.3.180.133) Tue May 20 10:12:16 PM EDT 2003
hi, I have a question....If Bill Gate's child had diabetes, how much faster do you think there would be a SAFE cure? I am just always wondering if it takes more than money, like time and testing too...

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 10:12:31 PM EDT 2003
Well, it's getting late. Thank you Dr. Ricordi for joining us tonight and giving us all a renewed sense of optimism.

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:13:00 PM EDT 2003
LOL Maryann, you are not the first to think that

Camillo Ricordi   (129.171.137.81) Tue May 20 10:13:58 PM EDT 2003
there are two recent articles published in JAMA highlighting how despite enormous investment by NIH there are so little developments towards curing diseases ... a lot of basic science investments but no translational strategies. I am happy to see that finally our message got out and it is now matter for public debate.

Allison Sevaun, 5 dx'd @ 3; daughter to Jean, dx'd 1949  (207.213.88.135) Tue May 20 10:14:01 PM EDT 2003
Thank you, Dr. R.

Ellen (FL) Zack 15, dx'd @ 15 months  (152.163.253.71) Tue May 20 10:14:04 PM EDT 2003
Thank you Dr. Ricordi. May you have continued success in your quest to cure this disease.

Sonia mom of Lilia 5 dx'd at 21 months  (66.214.123.175) Tue May 20 10:15:00 PM EDT 2003
Thank you Dr. Ricordi

Sunshine Brent's mom (dx'd 5/02) 13  (205.188.208.11) Tue May 20 10:15:18 PM EDT 2003
Thank you so much Dr. Ricordi...and good night!

Camillo Ricordi   (129.171.137.81) Tue May 20 10:16:00 PM EDT 2003
There is a lot of people who could make an instant difference. Unfortunately they do not always realize that they may be the one with the contribution that can make the difference. many of them think that the NIH will take care ...

Judith David, 17, diagnosed at age 2 months  (65.171.1.205) Tue May 20 10:16:27 PM EDT 2003
We very much appreciate your efforts and your optimism, Dr R.

Jeff Hitchcock Marissa, 15, dx'd at 24 months  (216.68.227.14) Tue May 20 10:16:32 PM EDT 2003
For late comers, I'll have a transcript posted in the morning. Thanks again Dr. Ricordi.

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:16:33 PM EDT 2003
I always think: 1 million people wit hD -- if they each raised $1,000 we'd be all set

Marisa mom of Scott 9, dx'd at 7  (171.75.57.175) Tue May 20 10:16:41 PM EDT 2003
Dr. Ricordi, thank you for taking the time to speak to us tonight and for your continued dedication to find a cure for our children.

Camillo Ricordi   (129.171.137.81) Tue May 20 10:17:29 PM EDT 2003
I guess my time is up ... so many things to do ... and so little time ... thank you for your comments and good night!

Moira Lauren, 11, dx @ 6  (24.48.182.193) Tue May 20 10:17:40 PM EDT 2003
yes, thank you for using yiour great mind for my girl!

Rick (MO) Grant's Dad, 6, dx'd @ 5  (68.86.90.240) Tue May 20 10:17:50 PM EDT 2003
Thank you for your time Dr. Ricordi... best of luck to you and your team.



                 
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