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DRI Presentation – Reaching the Biological Cure: Resolving the Remaining Challenges

A few weeks ago I received an email from the DRI about a presentation that they would be doing in south Florida that was practically walking distance from where I live (well, if I was exercising the way that I should, it would be walking distance!).  I knew that I would definitely have to RSVP and attend the event so that I could get some more information about the BioHub and hopefully share some information from those that are not keeping up to date with the DRI.

I know that a lot of you are still upset and have a bad taste in your mouth whenever the word BioHub or Biological Cure is used.  I also think that we all had a reason to be upset, but I’m not a big believer in just complaining about the past, I’m more worried about creating the future.

With that being said, I wanted to see where the DRI was with the BioHub project, so here is a cleaned up version of the notes that I took during the presentation.

When I first got to the event location and signed in, the first person I saw was Antonello Pileggi. I  spoke to him briefly (he was the presenter) and he talked about there being updates and they wanted to hold presentation to provide updates. He mentioned that they wish they could move faster because, but there are parts that are time consuming.

I was by far the youngest person at the presentation, except for one kid probably under the age of 13.  The primaril age was over 50-55 years old (I probably shouldn’t be guessing people’s ages). I could over hear a lot of conversations being had about grandchildren having type one and that they didn’t have diabetes but were there to learn more for their grandchildren.

The presentation opening up with President, CEO Joshua Rednik introducing himself. He does not have diabetes anywhere in his life, but did a great job explaining his journey of becoming the President of DRI.  I personally do not mind that he is not affected by diabetes in his personal life because sometimes decisions are better made from a business frame of mind than they are emotionally.

Next up was Antonello Pileggi.

He is a scientist, so scientists usually talk fast and most of the time, I do not understand what they are are talking about, so I will be asking for clarification, and hopefully a guest post from Antonello himself about the presentation.

When it comes to diabetes research and the scientific and biological stuff, I need things simplified, so one great image that was presented was that Insulin and glucagon are the ying and yang of diabetes control.

There were a lot of slides about the need for control and there was a graph of a J that reflected that tight control led to less retinopathy and other “pathy”‘s, but then there was a shift where too tight of control can lead to seizures, death, etc.  This is something that I was previously familiar with, but as I mentioned above, I’m not 100% sure what the knowledge of the attendees were, I’m assuming pretty darn high based off the questions asked.

One very cool slide that was shown to use was a bunch of images of different islets (pig, monkey, human, rodent) and how they have similarities and differences and why these differences are why rodents have been cured, but not humans.  One neato piece of information given was that there have been no known occurrences of type 1 diabetes in monkeys.  If they have T1D in the wild, they don’t survive and none have been reported within zoos.

There was some data, that was passed over too quickly before I could type it all up about the numbers on the amount of orgons that are donated.  Basically, the pancreas is pretty much the lowest donated organ.  This led to a brief discussion about the JDRF nPOD relationship.  I was not familiar with this and do not know much about it, so if you do, please leave a comment below.

Remember when I said there is a lot of biological / scientific stuff that I don’t quite understand?  Well, here is one of them.  I do plan on doing a bit of reading on this topic, but just wanted to share at least some of it so maybe you can do the same.

There was a discussion that  IL-2 at low doses may promote regulation of the immune system and control autoimmunity in type 1 diabetes.

What is IL-2?

It stimulates immune cells and their functions……sorry but that’s about as far as I got on that. (Please remember, I am looking to get further details regarding these topics).

A little more about the BioHub was discussed.

The omentum is the area they want to transplant islets. Using Thrombin which creates plasma gel. Then fold omentum over and basically create a sandwich. (Like how technical I’m making this?)

There was a brief Q&A at the end of the presentation and I did not want to post any of these answers until I did get some clarification from the DRI.

If any of what I just wrote above is totally wrong, then please let me know.  Like I said, I am writing this from my perspective and my level of knowledge.  I will not pretend to be a scientific writer and to completely understand the biological side of this disease.

Check back for some follow ups on some of the items mentioned above.

DRI Walk for Diabetes Recap

This past Saturday, Amanda and I ventured 30 minutes down the Florida Turnpike to Dolphins Stadium for the DRI Walk for Diabetes & Family Fun Day.  I haven’t had a chance to attend a DRI walk before because of previous engagements, but this year we put it on the schedule well in advance.   I’ve been to Dolphins Stadium over 10 times since I’ve lived in Florida over the last 8.5 years, and every time I go there for something, I still picture Ace Ventura with the big wad of gum in his mouth bringing ole’ Dan Marino back to finish the game against my Philadelphia Eagles, but that’s a bit of a side story. Read More

Speaking with Children with Type 1 Diabetes

Over the weekend, on Saturday, I had the opportunity to speak to a group of parents and children with Type 1 at the PEP Mini Conference by the DRI Foundation.  PEP stands for Parents Empowering Parents. This is a wonderful group because when a child is newly diagnosed, these parents reach out to the new parents and let them know that they can do the things that are going to be needed in order to help their child manage their diabetes.

I was asked to break off into a small little group with the teens and just have some sort of conversation with them.  I was joined by Patti Sinkoe, M.S.  We ended up talking about some of the things that may bother or frustrate them.  One of the most common examples given was that they don’t like being asked “Did you test your blood sugar?”over and over and over.  But, as us adults with Type 1 know, those questions will continue to be asked.  We worked on providing recommendations to the parents on how they could ask that question a little better.  For example, “What is your blood sugar?” because that at least implies that they trusted in you to have already tested.

Dr. Wendy Satin Rapaport, who is a clinical psychologist, was there, and damn was she great.  Having a psychologist at a meeting like this is extremely helpful because people have questions, and some times people may be scared to go and see a psychologist.

Finally, at the end of the event, I was able to speak with some parents and introduce them to DSMA and DSMA Live ‘Rents talk.  Hopefully we will see some of them participating on DSMA soon enough.

 

Non BioHub DRI News

I’m not going to be covering the BioHub news that was released today from the DRI. Please check out the post Mike did at Diabetes Mine because that covers just about everything you need or want to know.

This post is about some un-related DRI news.  Every so often the Diabetes Research Institute Foundation holds PEP (Parents Empowering Parents) Talks, which are a few hour mini conferences  that allow parents and other PWD’s to discuss emotions, challenges, managing relationships, etc.  There is one at Joe DiMaggio Children’s Hospital in Fort Lauderdale this Saturday from 1-4 p.m.  You can find more information on the DRI’s PEP Talk site.

After I signed up to attend the event, I was asked if I would participate in holding a breakout session with the teens in attendance.  I am super excited to be able to do this and help answer any questions that I can.  Amanda and I will be there, so if you are in the Fort Lauderdale area, I recommend you stopping by, it is free!

Diabetes Research Institute and Anti-Rejection Drug Study

Last year I took my first visit to the Diabetes Research Institute. I have talked about it before, but after leaving there, I felt more confident that a cure was in the future, not near future, but in the future. I have also voiced my opinions about there never being a cure because of the financial reasons behind finding a cure. But today, I want to talk about another step in the right direction of that cure from the DRI. Please note, I am by no means a scientific kind of guy, nor do I play one on tv. When I talk about diabetes research and stem cells and this and that, I try to make it as simple as possible without big words because that’s the only way that I understand it.

If you want the scientific explanation, you can read the DRI’s press release.

When I visited the DRI facility in Miami, one of the main things that I learned about and thought was the most fascinating was the fact that our body rejects so much stuff and that even if you receive some sort of islet transplant, your body just wants to destroy it as soon as possible. That is where the immunosuppressive therapy comes into play. Basically, they are drugs that you take to keep your body from attacking the new transplant. These drugs also have some serious side effects and can cause some pretty big damages, such as kidney failure.

I remember the DRI researchers talking about how they are looking for better ways to keep the body from attacking it’s new transplant, without the intense drug therapy. In this recent study, the DRI shows that stem-cells can replace those anti-rejection drugs.

I don’t want to do the DRI and the Cure Alliance or you all any injustice, so I recommend that you read the press release from the DRI to learn more about the study and mesenchymal stem cells.

To me, the best part of this study is that it was performed on humans! Not mice, humans! The study was performed on people with end-stage renal disease. I love that mice are cured of diabetes, but I’d rather hear more about studies that are making headway in the fight against diabetes in humans. This is one of those studies.

I am privileged to have the Diabetes Research Institute right here in my backyard, well not literally my backyard, but that would be pretty damn cool. I strongly encourage anybody who visits the south Florida area to make a trip to the DRI. Heck, even if you’re going to Disney to Orlando, plan a day trip. It’s about a 4 hour drive from Disney, but it would be well worth it.

Also, if you do decide, let me know and we can schedule a D-Meetup.

Take care and keep the hope alive.

Walgreens and Diabetes Research Institute

I have not really dealt with Walgreens too much when it comes to diabetes supplies.  I’ve had some rough times with their largest competitor, which has led me to never shop there again.  Well, here’s another reason why I shop at Walgreen’s now.

In south Florida, which goes from Port St. Lucie to Key West, you can purchase a $1, $5, or $10 scannable during the month of March and write your name on it.

DRI - Walgreens Scannable
*courtesy of the DRI

There is also a can jar that is in some Walgreens locations as well.  This can jar is perfect for your left over change from your purchase (for those that use cash).

To learn more about this south Florida Walgreens and Diabetes Research Institute fundraising program check out the full information with the link just above.

Thank You for Your Donation to Diabetes Research Institute

I mentioned back in late October and early in November that I would be donating the commissions in November from my Amazon affiliate link to the Diabetes Research Institute.  First, I want to say thank you for those that remembered to click the little Amazon button down below (right now it’s a Steve Jobs banner) to give me the commission.  The Amazon commission is not a lot, around 3-5% of purchase price.  But I am proud to say that I will be donating $50 in honor of the DOC to the Diabetes Research Institute.

I know $50 does not sound like a lot of money in the big scheme of things, but it’s definitely a lot more than what I thought it would be.  So, in order to reach my larger goal of $1,000 by December 2012, I will be continuing this donation offer.  This is how it works:

  1. You want to buy something from Amazon
  2. From my blog, on the lower right hand corner there will be an Amazon banner (it will change depending on which book I am reading at that time)
  3. Once you click on it, it will take you to Amazon.com
  4. You purchase just like you normally would, no codes needed
  5. The DRI donation fund will receive a 3-5% donation of your purchase price
Pretty simple huh?  So if you’re buying online for  Christmas this year, why not have a percentage of it be donated to the Diabetes Research Institute?
*This post is not sponsored by anybody but my own decisions.  The Diabetes Research Institute is where I choose to donate this money to because of my own personal experiences and opinions.  Any other questions…. e-mail me.

Diabetes Research Institute and Hope

Diabetes Research InstituteLast week I wrote a post about my visit to the Diabetes Research Institute and briefly touched on some of the research and progress that they are making.  I wanted to write this follow up post last week, but I’ve had some big things going on in my life lately that I can’t really speak about publicly yet, but I will soon enough, don’t want to count my chickens before they hatch.

Anyway, I want to get to the idea of hope.  I have had mixed feelings about a cure throughout the years I’ve had diabetes.  I’ve had the, there will never be a cure attitude.  I have also had the, a cure is right around the corner idea.  I’ve thought to myself, should I advocate for a cure, or should I advocate for a better life with diabetes?  Well, I basically advocate for both now.  I advocate for everything.  My theory is this: I will fight for a cure, but until that time happens and during this trial and tribulation period, I will try and do everything that I can to make sure that every diabetic gets the respect that they deserve.

But why am I talking about Hope now? Because that is exactly what the DRI restored into my brain.  I now have hope again, and not just hope, but confidence in a cure.  I now know that there will be a cure.  Sure, there are still the economics behind it.  Where will all this money go after there is a cure found, but there will then become other ways to make that money in another form.

The scientists here all communicate with each other.  There is no withholding of facts and findings in order to have their name on the groundbreaking study that just occurred.  It is very difficult to succeed as a team and reach a larger goal when information is not being passed along.  I saw the passion in their eyes, in their voices when they were speaking to me.  The people in charge are just as fantastic.  The leadership and focus is one that you don’t see very often.

Thank you to the Diabetes Research Institute for restoring hope in my eyes.

***Disclosure: I was not paid in any way be the Diabetes Research Institute to attend this tour, to write posts about it, or to include links.  These are my opinions and thoughts based upon the information that I was provided during my tour.  I am not a doctor, a scientists, or any form of medical professional.***

Confident in a Cure: Diabetes Research Institute

Going into my tour of the Diabetes Research Institute, I did not know a lot about the DRI and the research that was going on.  I knew that they were fully dedicated towards research and finding a cure and that if you are a mouse with diabetes, then that’s the best place to go for some help.  I’ve said before that even though I advocate for diabetes, cure and help until we find a cure, I do not understand the scientific and medical background of everything.  I get confused by the long and confusing names.  The DRI did a great job of breaking down what they were talking about.  I’ve spoken to scientist before and understood nothing, I must say that they explained it their way and then broke it down for myself, my mom, dad and Amanda.

The first area that we went to for a tour was in this secret, James Bond looking room.  I thought it was just a wall and then they hit a button and the wall slid over and a scientist walked out.  If I get names wrong in here, please correct me.  In this room, they were using a multi-million dollar microscope that allows you to see into the eye of a small animal to see how the implanted Islets are being treated by the immune system.  Once again, for more details on any of these things I speak about, I encourage you to go to the links I provide to the DRI to get further details.  I will only explain what I understand.  When something new is put into your body, your immune system automatically tries to determine if it’s you or an intruder.  Once it realizes it’s not you, it will attack and eliminate whatever it is.  This microscope allows scientists to see how this process takes place.  Before this technology was available, they could not get an accurate view of how this happens.  The scientists continued to stress that no matter how hard you try, you cannot replicate the real thing with a petri dish.  They know that they must do something to protect these Islets.

And with that, we were taken to another room.  This is where we met Dr. Cherie Stabler.  Her focus is on tissue engineering and developing islet encapsulation devices. An islet huh?  Well, we had just learned that once the islets are transplanted, they are attacked and very few of them actually survive to even do anything of any good.  There are some serious medications that exist to try and help prevent and slow these attacks down, but they could potentially harm other parts of your body, so not everybody can handle the drugs.  What Dr. Stabler is focused on is creating a “home” for the islets to be safe in.  A barrier between them and the immune system that is trying to destroy it.  There is an area near the stomach that would be a perfect home to transplant these islets, so all the different departments of the DRI are working together to get this done.

As a side note, and a pretty serious one, Amanda started to look very pale at this time and she told me she needed water, but there were no fountains around at that time.  Keep in mind that we were standing for nearly an hour now and it was hot in there.  We went into Dr. Stabler’s office to see images of what she was speaking about and as we left, Amanda grabbed ahold of my dad and I and she started to fade out.  And then she passed out for a moment.  This completely freaked me out because it had never happened before.  She grabbed some water and a snack and she sat in the lobby with my mom for the rest of the tour.  She really wanted to see the rest and didn’t want me to not see the rest, so she rested downstairs with my mom.  Luckily she felt perfectly fine and some blood pressure tests are in the near future.  Now, back to the tour that my dad and I continued on.

During this time, I put the iPad away because I had my hand on my phone making sure that Amanda was ok.  We went to take a walk past the area that the Ricordi Chamber is used when a pancreas is received from a recently deceased donor.  At this particular time there was no work going on in this room because there was no recent pancreas to extra islets from.  The next room that we visited did not have anybody in there either.  There was a going away part for one of the scientists and it was around lunch time that we were doing our tour, so I was not upset about that, it was totally understandable and acceptable.  We made a quick stop to the stem cell research lab, which is the one area that I did not take enough notes to fully understand everything, so I will need to do a little more research on that section of the DRI.

One of our final stops was to the lab or Antonello Pileggi, M.D, Ph.D.  Antonello was very passionate about his work when he was speaking to my father and I.  A lot of what he was talking about are things that we had discussed with others throughout the day.  Which drove a great message to me, that everybody is on the same page and that everybody is sharing information with everybody else.  This was the room that had actual live mice in there.  There were not any

studies with the mice going on at that current time.  One thing that was brought up during the conversation was how in some areas of research, they are trying to figure out exactly how Cancer works because, the immune system does not attacked and destroy Cancer cells.  So if they are not destroyed, then why not, and how can that possibly be used to help with the cure of diabetes.

The very end of the tour was basically just a summary of everything that is going on.  During this time, when everything was wrapping up, Dr. Camillo Ricordi walked by on the phone, but had the opportunity to shake his hand, what a privilege.  Like I mentioned several times, I recommend that you go to the Diabetes Research Institute’s website and learn as much as possible about the different studies going on.  If you are every in the Miami area, then please reach out to the DRI beforehand and schedule a tour, it took less than 2 hours.  Also, I highly recommend that you sign up to be a DRInsider and receive up to date information from the DRI.  More to come tomorrow.

***Disclosure: I was not paid in any way be the Diabetes Research Institute to attend this tour, to write posts about it, or to include links.  These are my opinions and thoughts based upon the information that I was provided during my tour.  I am not a doctor, a scientists, or any form of medical professional.***

Diabetes Research Institute Tour Intro

This is my first post in a really long time.  A couple weeks ago my parents were getting ready to come down for a week so the weekend before that was Labor Day weekend and I decided to take the whole time off.  I have not posted anything and I made the decision to totally disconnect myself from the online world for the time that my parents were down here.  That was way too difficult to do, so I was caught tweeting a few times or making a few Facebook updates, but I didn’t write anything for a while.  I took time off from this blog, my business blog, my book, and a few other sites I write for.  I just needed a break.

During this vacation, I was able to make my first visit to the Diabetes Research Institute.  What a great time and visit that was!  I have so many things to talk about.  I am not a very scientific person, so my posts are not going to get too technical or use a lot of the scientific and medical terms that were used by the scientists.  Not just for this reason, but because some of the words are too difficult to remember and I can’t understand all of my notes.

Anyway, my posts will start tomorrow of my thoughts.