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Your thoughts on the Jan 31 diaTribe interview with JDRF President and CEO

I just got read through many pages of a fairly intense thread on CWD in regards to an interview with the recently appointed President/CEO of JDRF, Jeffrey Brewer.

Here is the original interview:
Here is the CWD topic:

In hopes that we can have a healthy discussion about the interview here, what are your thoughts on JDRF’s New Direction, Mr. Brewer's Thoughts On The Cure, And Progress On The Artificial Pancreas Project?

Tags: CWD, JDRF, interview

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Never heard blindness classified as a disease before. Any cure for macular degeneration? Or atrophy of the optic nerve? As for people who are paralyzed & get out of bed one day & walk, what cured them because many people would like to have this cure?

Physical injury for which there is corrective treatment is not a disease being cured.
My thoughts exactly, Gerri.

Diseases caused by a pathogen can be treated and can be nearly eradicated with immunizations.

Autoimmune conditions with unknown causes and/or degeneration of an organ or cells, etc, have never seen anything close to a cure.

I've always chosen to refer to diabetes as a condition rather than a disease. There's not something extra in my body. There's something missing.
Well, I would put diabetes (both types) in the category of genetic disorders, and you're right, they're a lot harder to cure than infectious diseases.
I don't know that any have been cured, but a few are well-controlled (to the point of achieving normalcy in adults, instead of mental retardation) through diet, like phenylketonuria. Hemophilia can be very well-controlled these days, too.

But as for a cure, you're right, haven't seen any!
Have not seen biut no reason to not pursue! Whether its a cure, a cvaccine to eliminate and erradicate or an effective treatment strategy I'll take any of the above!! Wouldn't it be great to just tale 2 pills in the morning and have a normal life? I dont think it will be that easy but if we keep working on it, the results will come in time!! Remember folks the glass is half full to an optimist and half empty to a pesimist. I would rather hope and think that the glass is half full.
I agree about the good treads, but I do feel that we are close the cure, and that it does not look like an artificial pancreas. I wore a continuous monitor for 2 years before my transplant. I loved it and thought that it really helped me with my control. But I would not trust the sensor to relay reliable enough information to a pump that would control my insulin dose without my brain in that loop. I don't believe that mechanics can come close to a substitute for biology. And that is where the cure will come from.
I also am on a cgm only about 5 weeks and see amazing improvement, but it is pretty complex sorting out basals vs bolus vs insulin on board etc etc etc and for many it is just too complex. If the right algorithyms (sp?) can be developped and better sensors and infusion techniques along with rapid acting insulins that are truly rapid, I think that the investment on a parallel path may help keep some of us old timers alive long enough to live to see the cure
I think you will really like your CGM when you get used to it. You just have to learn when it is working well and when to question it. I found that it gave me more freedom to experiment with diet (lower carbs) and exercise. It was also nice at night.
And I'm an old timer too, but having had this transplant has really changed my perspective on things. I think we will both live to see the cure. I honestly feel that I am living the dream of the cure right now. Best wishes to you.
After reading the article I really felt good about the direction that the JDRF seems to be making.  I haven't had much involvement in the JDRF and only participated in my first walk in the fall of last year.  I do receive emails that are clearly making strides to start up support groups for the adults who have Type 1 and saw that there is a section on their website for adults who are newly diagnosed.  I hope that this expands into more resources that adults with Type 1 can look to.  For me, I really felt like the needs of each group of people were being considered.  Unfortunately, many on the forum for parents with children who have Type 1 were clearly disturbed that any cure that didn't involve one that would fix their child immediately was unacceptable.  Personally, I don't think we should close ourselves off from ANY possibilities.  You never know where the cure lies or the the door to one for that matter.
I had the same reaction to the interview, I was like "that sounds cool" however I had no idea about the level of devotion people had to the "Juvenile" in the term "Juvenile Diabetes". Even w/ a DX in 1984, I figured that "Juvenile" was just the quaint, old-fashioned way of referring to T1. I think my endo then used T1 back then and I've always used it, perhaps because as a 16 year old, I didn't feel juvenile? I like the organization doing a balanced approach, working both on improving current modalities and also working towards the more adventurous "cure" type of projects. I'm not quite sure I'd fee differently being in charge of a kid either. Diabetes in kids seems really difficult to manage and any sort of improvements to treatments seem like they would be very helpful?
I think the parents who got so mad because of the new acknowledgement of adult Type 1's is because they are still in the anger/fear stage, and are desperate in their wishes for a cure for their child. Whereas most adults with Type 1 have come to terms with the reality of it, and know that they're in it for the long term. If wishes were horses, beggars would ride, goes an old saying -- but parents of small children haven't had the time to get past wishes and deal with the unfortunate reality of diabetes for their precious child. They really do need our sympathy!
Hmmm, I'm not sure that a bad position is going to get my sympathetic. The whole point is understanding how to surf the waves of "inputs", whether they are food, exercise, stress, illness, growth, etc. I think I am pretty consistent in complaining about the medical industry being sort of placid in their approach to goal setting but I don't think that demanding that a large organization invest money solely into research is correct. I think that communication and strategy are things that have lower cost and can be implemented if a goal to improve is there. Those improvements can fuel more communication and strategy to improve things for more people while we are all waiting for the magic donut that will cure diabetes.
You know, my father has been a Type 1 diabetic my whole life (36yrs) and I don't think he used the term Type 1 until maybe 15-18 years ago. He just said he had diabetes or was a diabetic and he took insulin. Hmmm...I'll have to ask him. You gave me something to think about. As for treatments and cures...I'd love to achieve anything we can. I have two kids and I would like to see that they won't have to worry. Don't know that we'll see that, but one can hope.




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