Tag: research

Diabetes Jeopardy Answer #29 for D-Month: Without them, We Would have No Idea what Would Work to Help Those with Diabetes.

Posted on | by tomkarlya | Leave a Comment on Diabetes Jeopardy Answer #29 for D-Month: Without them, We Would have No Idea what Would Work to Help Those with Diabetes.

Diabetes syringe….and the answer is, anyone who has ever enrolled in a diabetes research project.

Years ago, I was talking to a friend, his name is Kenny Bernstein.  He had an islet cell transplant.  For a good amount of time, he did not need to take insulin, he did not need to check his blood sugars, he did not need to do any of it because he had an islet cell transplant.  (He did do it to keep notes for the scientific study in which he was enrolled).

But everything was normal from blood sugar to no need for insulin.  So many said it would never work.  the theory was just that….a theory.  Imagine the surprise when it turned out that some people were off insulin for years.

Now to be clear, this was a study and the patients were on immunosuppressive; it was only to prove the theory that islet cells could work if implanted.

Imagine people like Kenny, Gary Kleiman, Rita Hart, and so many others who went through this entire process having NO IDEA what would be the result.  As I was speaking to Kenny (in a conversation I have relayed many times and it drives me to my knees every time I repeat it), I said, “Kenny, you must feel great.”

Kenny looked at me and he smiled that most wonderful smile and he said;
“Tom I do feel great, but I didn’t do this for me, I did it for Kaitlyn (my daughter) and those like her.  This is not the answer, it is but a step.  We have much work to do.”

WOW.  Those who enroll themselves into programs for the benefit of science, for the benefit of taking management tools forward, or steps forward toward a cure; we need to stop and recognize these incredible individuals during diabetes awareness month.  Thousands, maybe even millions, of people enrolling so something can be learned in the search for that biological cure; or in the search for a better management tool.  If these people did not volunteer for these studies, and sometimes they HAVE NO IDEA what the result would be, we would be even further behind than we are.  Many things we take for granted, at one time or another, HAD TO BE TESTED ON LIVE PATIENTS.

So if you have enrolled in a study, any study, to benefit the causes of diabetes…..we all thank you and salute you this diabetes month.

For Diabetes Awareness Month:
This month, I will be highlighting someone in the diabetes community.  They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place.   I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are.  If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well.  Welcome to diabetes awareness month.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

How Smart are You???????

Posted on | by tomkarlya | Leave a Comment on How Smart are You???????

smartThis weekend had me at the Children with Diabetes’ Focus on Technology in Crystal City Virginia or right next to Washington D.C.   In as much as i so enjoy speaking to these great people. I’m also always there to learn as well.  You can never have too much knowledge when it comes to diabetes, and I have so much more to learn.

I had the wonderful opportunity to hear Dr. Ken Moritsugu, the former Surgeon General for the United States (some of their speaker’s resumes are quite impressive).  And he spoke om Health Literacy.  I wish everyone could have heard him.  Being involved as much as I am with the DIabetes Research Institute, I am constantly asked by someone; “What do you think of this research that I just read?” 

I think that anything that will better keep our kids healthy or take us one more step closer to a cure is what all of us look for daily.

But be warned.

A few simple steps might help us understand what is real, or close to a reality; and what has much further to go.

1. Consider the source.  People are doing research all the time, where are you reading it?  Is the information coming from a reputable scientifically respected magazine.  Because something is posted at a conference does not necessarily mean it will be a reality in the near future.  Know where the source is and how reputable is it?

2. Is anyone else able to duplicate the science.  Is it being done in a secret bubble or does the science make sense.  Is the field excited about the findings or is the excitement only coming from the lab doing the work.

3. Where in the research cycle is the science.  Is it still basic science or being done only in a mouse or is it in larger animal models like primates or in human clinical trials.

Ask your self these questions when you read something.  It is a basic guide and most of all; ask a million questions.  If the science is real, so too should the answers.

Diabetes has been cured in a mouse over 300 times. in as much as the science is important in the early stages, it takes a lot to be testing it in humans. Make sure you know what the science is about before getting too excited.  Our kids are not mice.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

T.G.I.F. (Thanking Great Individuals Forever)

Posted on | by tomkarlya | 2 Comments on T.G.I.F. (Thanking Great Individuals Forever)


His efforts are tireless and his reputation well-known not only to his worldwide colleagues but many PWDs and to parents who wait for a cure.  He works in the lab, lectures worldwide and yet, still finds the time to speak to those with a full heart investment interest in finding a cure for diabetes.

 Here he lectures and states on a two-year project to , “……learn how to transform an academic institution into a CURE FOCUSED Machine……”

Because it is that important to him that a cure for diabetes be found.

He has been published in over 600 scientific publications and issued 11 patents, and yet one is struck at seeing their child’s picture on the wall in his office to continually remind him of why he is at this mission day in and day out.

His official title is the Stacy Joy Goodman Professor of Surgery, Distinguished Professor of Medicine, Professor of Biomedical Engineering, and Microbiology and Immunology, and serves as Scientific Director and Chief Academic Officer of the University of Miami Diabetes Research Institute.  What is interesting about that title is it bears the name of a child who lost her battle with diabetes, Stacy Joy Goodman; again an ever reminder of the laser focus he needs to stay.

(Stacy and I spoke, and were together, as she bounced out of my office with the exuberance of a teenager with a lifetime ahead of her; just two days later she would be gone forever)…..her name in this man’s title is as powerful as his scientific findings and says mountains about how important he takes his challenge.

His lives by his own words; “We will cure diabetes, this is not a prediction, it is a promise.”

He is my friend, my colleague, and he (along with his incredible and entire team) represents the hope for my 2 children and why I come to work EVERY DAY for this place. 

He is Dr. Camillo Ricordi and he is Diabetesdad’s T.G.I.F.  Take a bow Dr. Ricordi.

Passionate People, We.

Posted on | by tomkarlya | 2 Comments on Passionate People, We.

 

5:30 am: I am on a shuttle on the way to Newark Airport.  Other businesspeople are on the shuttle bus as well; six of them together, me by myself.  They talked little of what their job was but I gathered they were regional managers of some sort of retail store.  I could tell you names and complaints they have of their senior management, of that they were very clear.  They talked of where they went last night, how tired they were, and they walked too much.

 But little discussion of what they do.

There is a common bond with those of us who are fortunate enough to work in a field that is so full of passion-oriented people.  Let’s call them POP for short.  The diabetes field is full of POP.  No matter what conference I attend or where I go for business meetings if I see someone who is part of the diabetes movement, conversation will immediately become about the latest in the news of the people we serve.  Management tools, education tools, and the latest in research are all approached pretty quickly.  

I look forward to learning all the time and wherever I go, the opportunities are branches of fruit waiting to be picked and enjoyed.  I also look forward to creating partnerships where both research funds are raised and we can help people at the same time.  POP where everyone creates a win-win-win.  Today I head to what I hope will be such a meeting.  A win-win-win by POP would make my day.

It is for my kids and those like them; because no matter where I go or what I do I am ‘in it to end it’.  It’s my driving force.  It is a saying I have used for over 15 years.  If I can go somewhere or speak to someone and raise one more dollar for the research to end diabetes forever, I’m there; and I’ll be there for as long as it takes.  It’s important to find this cure; to fund this cure.  If we do not work to fund research for a cure, research will wither away and die.  Already it is not as ‘sexy’ as it used to be and funds are getting cut right and left.  Many who started are changing direction or giving up altogether. 

I cannot.  I will not.

It’s about the cure.  And in as much as I will help in any other area if needed, make no mistake about it; it’s about curing diabetes.

I exited the shuttle bus to the Newark Airport Terminal to board my plane.  I turned and looked at the business people on the bus and said “Have a great day gentlemen.”  They all looked up as if I disturbed them with my interruption of their conversation.   I smiled as I walked down the steps.  My next two days will be exciting.

Those I left behind are not POP; I am a Diabetesdad.