How to do Disney With Type 1 Diabetes
Talking to Your Teens - Natalie Bellini & Dr. Joe
It's Not Just a Numbers Game - Joe Solowiejczyk
I think these two sessions at the conference were outstanding. IMHO the whole of both was more than the sum of the individual sessions.
Natalie and Joe roll played the stereotypical fights between parents and teens over diabetes issues. It was like a “Best Of” compilation album sold by Time Life on late night TV. All the classic titles;
…. this and much much more. All your for just for just $19.95 plus shipping and handling…
Now their point, and this was a bit of a shock to me, wasn’t for us to brush up our arguing with our teen techniques. No their point was and is that as parents our stuff is our stuff and their stuff is there stuff. We love them. They love us. As parents we need to lead the family away from the classic fights and into sing another tune of parent teen communication. (can I beat this tune thing (drumb) any harder?)
Let the kids know you love them. Touch them. Tell them your fears as your fears knowing they may not share them. Oh and don’t hover over their shoulder while they test - Apparently it doesn’t make the meter read faster. (Who knew?!?)
…and more! Much Much More!
Joe is brilliant, wild and crazy.
It is worth the price of admission to the whole conference just to hear him explain what you should do if you expect your teen to come in and say, “Father, I have realized I need to step up and be more proactive in my diabetes care… and I will clean my room… and be nice to my kid sister.” The punch line is hysterical but in my book Joe should have a well earned copyright on his material so you will have to go to a conference to hear it, at the very least I am not giving it away. (I do wonder how well that bit translated to the folks from UAE.)
My take away from Joe was about actions, non-negotiable actions, in diabetes care. As parents we need to be consistent about boundaries. We don’t have to like diabetes. Our kids don’t have to like diabetes but just like dating (the dating analogy is also a fantastic piece of Joe’s coaching) or other household issues there are non negotiable actions like be home at midnight that have to happen or there are consequences. We can’t fall into the trap of feeling sorry about the diabetes that allows slack on the care non-negotiables.
Now I don’t mean to make Joe sound like a drill sergeant (but the though of Sgt Joe is a laugh, Sgt Pepper maybe...)He is as far from it as possible and there in lies the key to his message. I make a huge separation between serious and solemn. I think Joe is very serious about diabetes care and I am equally confident his isn’t often accused of being somber or solemn.
Now at first these two sessions seem very different, touch feely non argumentative dealing with teens vs. you don’t have to like it but you gotta do it non-negotiable Joe. The truth is they were both right on and both need to be part of the deal. Keep your junk, your junk, love the kids, be honest and firm on the non negotiable actions.
They are teens – keep in mind your own teen years and put into that the amazing responsibilities type 1 kids are faced with and be impressed.
I need regular reminding of the skills these things require. I think we do OK as a diabetic family but I figure some coaching is a good idea. I look at it this way, Tiger Woods has a swing coach so nobody is too good for some coaching.
Natalie and Joe are Animas team members. I have very high expectations and I can be as tough on Animas as any of Natalie and Dr. Bob’s teen arguments. But I can be taught so I have to say that I am please that Animas appreciates the need for and supports the non technical coaching that these folks do so well.
Yes Audrey you can quote me to me (and how about having them do there bits back here in Philly instead of everyone flying to Orlando? You have a nice meeting room there on the second floor in West Chester. ;))
Over the Last few months I have seen a number of JDFR press releases about their Industry Discovery & Development Partnership Program1 (IDDP.)
As a proud supporter of JDRF’s efforts to find a cure I am typically happy to read of some strange sounding, very technical program, to address some specific cure avenue or therapy for living with type 1.
Unfortunately I am curious. That curiosity has been trained with a degree in finance and a few decades of reading the business news. I kept wondering about things like “Partnership,” “participation in value creation,” “collaborative relationship,” and the particularly interesting “up to a level of $5 million per program.” In short I wanted to know what the deal is.
So I scoured JDRF’s web page. I sent a request into their contact us link. I found and heard nothing to end my curiosity. Some time passed and another press release came out. This had an email for a contact at JDRF. So I emailed some fair but blunt questions.
They didn’t email back answers - They set up a teleconference.
I did more homework.
I was very impressed and please with the candid answers they provided.
Among the key points we talked about are:
I was able to find a very detailed outline of one of the agreements in the 10K report of one of the IDDP companies.3 It was the full agreement redacted slightly to remove a few specific confidential items. From this and another firms annual4 report I found that the possible return of research funds was between 3 and 5 times the JDRF funding.
I was comfortable with the explanations JDRF provided. I appreciate their need to balance disclosure and information overload. While many people would be more confused by some of the information I read than enlightened, I think that it should be more readily available.
I would like to see JDRF’s financial statements break out IDDP funding from more traditional pure academic research. (I would also like to see the funding for both IDDP and academic research broken out into key JDRF mission goals, like; Beta cell replacement, Beta cell regeneration, Auto immunity, Complications, Artificial pancreas, etc.)
JDRF’s 2006 financial statement5 says that 167 million was spent on programs. That is 86 cents on each dollar contributed. Management and fundraising was less than 15 cents out of a dollar contributed. This is very good ration of programs to operations. Of the 167 million 131 went to research and 36 to public education. I am told that IDDP programs are bout 10 to 15% of the research expenditure. Like I said I would be happier to see that broken out.
I have seen enough financial hanky panky that I would like to see JDRF statement of financial ethics backed up with some kind of an independent confirmation of compliance, particularly where up to 5 million dollars per project is being advanced to for profit firms to speed bringing advanced technologies to our children’s care. To me work to a cure is too important not to have such ethical practices prominently stated and audited.
Dad to two T1 kids.
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Useful Links and notes.
2 JDRF Statement on Conflicts of Interest
3 Sangamo BioSciences, Inc. (Nasdaq: SGMO) SEC filings
4 Transition Therapeutics Inc. Financial Reports
5 JDRF Financial Statements
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