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DRI 2.0 Connecting the Community – My 2 Cents

dblogI was excited for a while to attend the Diabetes Research Institute’s 2.0.  This conference shows me that the people working towards a goal are finally listening to us web diabetes bloggers.  The list of attendees was amazing.  Just to name a few, Kerri Sparling, Manny Hernandez, Allison Blass, Scott Strumello, Gina Capone, and Sara Knicks.  This was just a one day conference and I unfortunately not be at all places at once but here is my recap of the event.

The day started off great.  The free coffee was spectacular.  Morning started off with finally meeting Manny.  What a great guy he is.  Just as nice and genuine in person as he always has been online.  We briefly discussed how awesome it is that the DRI is connecting with the diabetes community and not just speaking with doctors and researchers.  Manny Hernandez_Chris StockerManny was also very helpful in giving me some key insight about Cobra and certain people that I should speak to in order to get some better information about it.  I told him that with not working at the diabetes company anymore, it felt weird to be at a conference as an attendee and not behind the booth working it, I actually liked it better.

After the breakfast, or lack there of in my opinion, we were herded off into the next room to hear the lectures and updates from three of the top researchers in the world.  To introduce the three speakers was Dr. Nemery, she is a south Florida pediatric endo that is one of the best out there.  She finished her introduction by saying, ” my goal as a pediatric endo is to not have to treat my patients with insulin.”  Well said.  The first speaker was Camillo Ricordi.  It was very difficult to understand his accent, plus he spoke to us like we were also scientists and doctors, so it was tough to understand what he was talking about.  The main thing that I understood from his lecture is that insulin producing cells generated from human embryonic cells protect mice from diabetes.  That sounds like a good start to me.Ask the Researchers_DRI

Next up was Luca Inverardi.  Once again, this lecture was just as difficult to understand.  I believe that the DRI videotaped every session and plans on putting it up on their website or having the videos e-mailed to the attendees, I will find out and you all know.  The last speaker before the next session was Antonello Pileggi.  Now, by the time he started to talk, I think the whole crowd was becoming hungry, very hungry.  It was becoming difficult for me to concentrate because my stomach was taking over my brain.  The next session was the most informative in my mind.  “Ask the Researchers”

One of the first questions asked was asked in a “dummy” type of way, which was better for the people in attendence.  A lot of the research that is done can be classified into two parts, there are the “attacker” cells that cause diabetes and then the “victim” cells that get killed which causes diabetes.  The question asked why all the research is done figuring out how to help the victim cells, but why isn’t research being done to stop the attacker cells?  The scientists discussed that there is research going on in that area, but it doesn’t look as successful as the research being done on the victim cells.  Dr. Jay Skyler is one of the worlds most respectable doctors / researchers of diabetes.  Someone had asked a question on why there is such an epidemic of diabetes now and although there were a lot of answers Dr. Skyler describe it as there being a lot of cases of Type 1 plus type 2, an overweight child with type 1 which makes them become even less insulin sensitive and causes type 1 at a faster rate.  I am not sure how this next statement relates to diabetes, but he talked about how foreign countries feed their young feces in order to expose them to germs at early ages.

The next question was the mFood from DRIost important to me because I had heard so many different numbers and percentages.  “What are the chances that a child of a type 1 will also have diabetes?”  Well here is the breakdown.  If the father has diabetes, then there is a 6% chance, if the mother has diabetes then 3% and then if both parents do, it is 15%.  The reason that the 3% difference is there between men and women is due to unexpected abortions.  The final question was asked about an artificial pancreas.  Although an artificial pancreas can become a great tool in management, it is not a cure.  There is one main reason why.  In type 1 diabetics, when we eat the insulin that we then bolus with, or the artificial pancreas releases will never catch up to the food.  Meaning that 2 hours after you eat, your blood sugar may look normal, but in between those 2 hours your blood sugar has spiked which is still causing high blood sugar numbers.  In order to fix this, you must be able to anticipate the food that you are going to eat.  With an insulin pump or MDI even, you can do this.  You can count your carbs before eating and bolus, 10-15 even 20 minutes before the food touches your mouth.  Which, when lunch time came at the conference, we didn’t know what was for lunch until it was right in front of our face so there were 4 diabetics at my table all wondering when and how much to bolus, not a good move on part of The Signature Grand.

The final part of the conference, well for me at least because I had to leave at 2 p.m. to get somewhere that I had plans for a long time to be at, was about connecting the community and involved a panel with Jeff Hitchcock (Children with Diabetes), Manny, Scott Strumello, Kerri, and Ellen Ullman also with Children with Diabetes.  There were a few questions thatConnecting the Community Panel were prepared for them about how the diabetes OC has helped them, why they started, and advice tips from them.  A few quotes and answers that I really liked from each of them are listed below:

Scott – Diabetes is too much about glycemic control and not about the other feelings that go along with it.

Kerri – There was only bad things about diabetes, there just had to be more to it than that.

Jeff – We all seem to be invisible so this gave us a voice.

Ellen – As a parent, it gives you a chance to vent because you don’t want to do it in front of your kids.

I hope that this was somewhat helpful.  You can check out the other’s blogs as well because I am sure they will have some updates also.

Have a great Monday.

JDRF vs ADA – What are your thoughts?

First off, if I have anymore computer problems I am going to flip out and throw this thing out the window.  I was getting some sort of script errors and I don’t know what the heck was going on, so I was pretty much computer-less yesterday.  Anyway on a better note, I have my cup of coffee next to me, making Amanda some chocolate chip pancakes as I speak.  Today is going to be a long day, but what day isn’t anymore.  Long day at the office, long night of football, then the gym, then dinner, then work at home and maybe watch some football if I’m lucky.  I wanted to do this post yesterday, but obviously I couldn’t so here I go.  The JDRF vs ADA, what are your thoughts?  Here are mine (if you care)

I mentioned briefly the other day about how most people have their favorite charity or think that theirs is the best so they want the money for theirs because that cause is more important to them.  In my mind there are two large diabetes non-profits, obviously I am talking about the ADA and JDRF.  Everybody may have their own opinions on these 2 organizations, but overall they are good.  If I were able to only donate to one of them and not both, which I do at this time, this is how I break it down.

I see the ADA and JDRF having two different approaches.  ADA being about advocacy and JDRF being bout research.  So there are two different train of thoughts for me here.  I believe that the ADA is doing a decent job with advocacy in Washington.  Could they be doing better, of course!  So when I donate a dollar to them, I am donating a dollar thinking, “Ok, they aren’t going to help me find a cure, so they are going to help me live a better life with demanding certain rights and insurance priveledges for me”  It is almost as if it is accepted to not find a cure and just deal with the fact that you have diabetes, so let them fight for you and be your voice in Washington.

According to the American Diabetes Association, 24% of funds go to research and 23% goes towards advocacy, however, 21% goes to “fundraising.”  What exactly does that mean?  That $0.21 of my $1.00 goes towards creating a new fundraiser to gain another $1.00 from me?  So I have now donated $2.00 and only $0.48 cents has gone to research and $0.46 to advocacy, but meanwhile $0.42 cents goes to fundraising.  I am not arguing with where the money is being spent because like I said, I still donate to the ADA because I think the things they do are excellent, especially the amount of money they spend on information because the more information the better.  This is just the way my mind thinks of describing the two.

Next up, we have JDRF.  JDRF is my non-profit of choice.  If I had to choose any organization to give money to, it would be them.  The way that I view them is that they are here for one thing and only thing only, to find us a cure and get rid of this nasty thing we all live with.  They obviously dabble in advocacy as well, but their #1 goal is research and a cure, and so is mine.  I want to find something so any chances that my first, second born child will have diabetes will be eliminated.  According to JDRF, approximately 85% of every dollar spent is used towards research.  I’m all about doing it for the kids.

So when I compare the two I see that it only takes me $1.00 spent to get $0.85 worth of research with JDRF.  On the other hand it is going to take me $4.00 spent with ADA to get that same amount of research funded.  This is why I have come to view these two organizations in the way that I do.  I know there are skeptics out there that believe we will not have a cure so we may as well have somebody fighting for us to give us everything we possibly need.  And then there are positive thinkers that just know there will be a cure and do everything in their power to get to that cure, and that’s the boat I am in.  Not to say that one side is better then the other.  In fact, I also think that they should both work together a little closer.

For example, every year for the ADA walk their is a JDRF event the same morning.  Every year at the JDRF walk, there is an ADA event at the same time.  What are your thoughts, do you agree, disagree, am I just crazy?  I will continue to donate to both because I think they are both extremely important.  I know putting up ads and links on your blog is somewhat frowned upon in the dblog world, however if you have noticed that any ad that is on my site, I donate that money to JDRF.  I think this is a great way to easily donate funds to a non-profit of your choice.

Well, I must get going, like I said it is going to be a long day in this life of a diabetic.  So have a great day ya’ll