DIabetes Research Institute Foundation

Building an Empire for Our Children with Diabetes…..They Don’t Need to, but they Surely Do!!!!!!!

Posted on December 16, 2013 | by tomkarlya | 2 Comments

I have said it before; I have to do what I do. It’s a promise I MADE to my daughter and again, to my son. You probably made the same promise.

Last week, I attended a dinner. Well not ‘just any dinner’ but the annual Empire Ball in New York City benefitting the Diabetes Research Institute (DRI). Over a thousand people attended. Chris Wragge, Super-Anchor from CBS was there, Football great, Boomer Esiason was there (and gave a heartfelt speech comparing the success for his son’s battle with CF, and the promise of great things ahead from the DRI), and business people from all over the area.

This annul event (30 years and running) raised over 1.2 million dollar (over 32 million dollars to date). There were heartfelt speeches from so many; letters from the Governor and Mayor of New York; but these highlights are not what I found to be the most fascinating aspect of this dinner, although hugely appreciative.

Dinners are dinners. Every charity organizes black-tie dinners. At those affairs, there are scores of volunteers involved; most of them have a family member with diabetes. Many of those wonderful volunteers are parents of children with diabetes. What I do, and what others do; well we have to do what we do, don’t we? It’s for our kids.

If we want to move the dial in the diabetes world of our children, we need to be active in diabetes causes. This is about our children. As I stated, I HAVE TO do what I do—it is my personal connection, with two children living with the disease every day, that drives me forward with every ounce of energy I have.

With the exception of a small handful, these attendees did not have a direct connection to diabetes. Few knew the lives we lead; few new our ‘new normal’ since diabetes moved into our homes. Very few. Why would they attend?

Over a thousand people in attendance and I asked a few people why they were involved, why they came.
Jim, “My kids have no challenges in life; when I heard about the success of the DRI, I wanted other children to no longer have challenges either. I firmly believe they will get the job done.”
Michele, “Many kids live with type 1, that is unacceptable.”
Joe, “We, as a company always try to give back. We came because this group is passionate about ending diabetes……that is infectious. The DRI work is so worthy.”

You see, these people had no diabetes connection (for the most part). These people do not have to do this? They all, I’m sure, have their own charity worthy of support. But on this night, at this event, they are here for you, your children, and mine as well. They want to “Unlock the Cure”, as the event’s tagline states. When you look into their eyes, as I did, you would be convinced that they are driven to that end.

Many of these companies were part of rebuilding New York City after 911, one brick at a time; and they are not active in anything ‘just to be active’. They are active because they believe they can finish the job, it’s how they run a business. They do not start, or take part in anything, unless they firmly believe that the job will be completed.

As I pulled out of the Midtown Tunnel heading home for the evening, I wiped the tears that were streaming down my cheeks. The thought that, on a clear day, you can look out from atop a skyscraper in New York City and see forever. And many of those responsible for many of those buildings, and their management, and their upkeep, and their legal matters, and their financial matters were in one room, on one night, for one reason.

To help create a clear day for Dr. Ricordi and his team to see forever; to the end of diabetes with a cure. As I have heard my dear friends Charlie Rizzo (a D-Dad) and Peter DiCapua say many times; “….we’ll get there. That’s a promise.”

A big THANK YOU and God Bless to all of those responsible for creating magic on this night. For me, that’s a promise worth building upon; one brick at a time.

I am a diabetes dad.

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

Diabetes Jeopardy Answer #28 for D-Month: MY PERSONAL Favorite on this, Thanksgiving Day, for My D-Kids and Those Like Them.

Posted on November 28, 2013 | by tomkarlya | Leave a Comment

….and the answer is, who is Camillo Ricordi.

There is no argument that there is much great research happening in the world today and surely, all of us parents, are unified in the single thought that we want the cure; yesterday. Dr. Ricordi made the decision years ago that it was not important that HE necessarily be the one to find the cure—-but to just find the cure. He has knocked down the academic walls around the world to share information in the common goal to find a biological cure.

The Diabetes Research Institute is unique in the fact that their collaboration is known throughout the world. There can clearly be discussions about research and who is doing what; what is an accepted fact is that Dr. Ricordi’s team approach worldwide in sharing information to find a cure is unique in both their approach and collaborative effort. His team’s recent discovery of the BioHub has attracted scientists from all around the world with the unified goal to fast track this approach to get it to the patient.

Will it happen tomorrow or next year? No, it won’t. But opening the doors of the DRI wide open to accepting any scientific approach to make this happen in the fastest possible means is not only unique; it’s refreshing.
(fair disclosure, I work at the Diabetes Research Institute Foundation; my personal disclosure, I choose to work there because IN MY OPINION I know of no other place like the DRI which consists of all phases of research in one building with a collaborate worldwide philosophy to end diabetes forever; in a TEAM approach led by this incredibly talented man.)

Just some of Dr. Ricordi’s Bio from the DRI Site:
Camillo Ricordi, M.D. 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. At the University of Miami Leonard M. Miller School of Medicine, Dr. Ricordi also serves as Chief of the Division of Cellular Transplantation, Department of Surgery, Director of the Diabetes Research Institute Cell Transplant Center and Responsible Head of the cGMP Human Cell Processing Facility, an NIH funded cGMP facility that has been providing Human Cell Products for research and clinical applications at UM, in Florida and across state barriers since 1993.

Dr. Ricordi serves as President of the Cure Focus Research Alliance and Chaiman of the Diabetes Research Institute Federation, coordinating and promoting cure focused research at over 24 leading institutions worldwide, while further developing the telescience platform technology to eliminate geographic barriers to scientific collaboration. These initiatives now allow scientists and project teams from around the world to synergize efforts and work together like if they are in the same physical space.

Dr. Ricordi has authored over 600 scientific publications, and as an inventor, he has been awarded 11 patents.

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’.

A Questions is Asked…..Diabetes Needs More? Do We? Your Thoughts Please.

Posted on January 19, 2013 | by tomkarlya | 9 Comments

On FB yesterday I read the following question from a parent:

I am tired that everywhere I go there is a support this or support that except for our t1d children and families does anybody feel the same? In the world where we find products all turning pink or a telethon or paper Shamrocks being sold or even a hot air balloon paper cut-out being sold at registers; the question is a good one. Do we need more?Being with the Diabetes Research Institute Foundation (DRIF), I often marvel at the outreach capabilities of our colleagues at the ADA and JDRF. I hear people say to us all the time, “who are you guys?” “What’s the difference between you and the JDRF; or you and ADA?” “We love that you guys are totally focused on a cure and know you are known for collaborating but what is the relationship with the DRIF and other organizations?”

And there are other diabetes organizations as well that all are constantly looking for assistance and I imagine asked the same questions as we, at the DRIF. scholarships to those with diabetes, camps, foundations, diabetes centers, offering supplies, other research arenas……….if they all came together under one umbrella I assure you that the world would definitely know who that entity was, but there is not just one entity dealing with diabetes.

Nor should there be.In as much as I’m the first one who states that we all need to continue to strive and find ways to work together; but thinking for one second that all diabetes organizations should work as one is a naive thought at best. Work together, when needed?….yes; work as one?…no. If you Google ‘diabetes non profit organizations’ you will see 3,130,000 ‘finds’. That is a lot.Diabetes is a very complex disease with many different aspects; and so are there many areas of diabetes in the nonprofit arena needing support. Volunteer and financial support of the many different aspects is very important. People feel it’s important to support the partnering with private companies for better management tools (JDRF), people feel it is important to fund education in schools (ADA), and advocacy in legislative branches (ADA, JDRF), funding for scholarships (Diabetes Scholars Foundation) Funding for Camps (Diabetes Education Camping Association), research for a cure (Diabetes Research Institute Foundation, JDRF, and some by ADA), support of athlete initiatives (Chris Dudley Foundation, RidingOnInsulin.org, Iron Andy Foundation and many more), not even to mention the many organizations that help people aboard (Diabetes Hands Foundation, International Diabetes Federation, Insulin for Life, and LIONS International to name but a few) and even on the local level there are thousands more non profits helping locally with diabetes assistance.

All of these organizations (and there are many, many more) do great things helping the many aspects of ‘the diabetes world’. However, there is not a one-singular-all-encompassing diabetes organization. And it is probably for that reason that one item, like a shamrock does not represent all of the different diabetes interests.

Now it may also mean that same events occur on the same date around the country; it may mean two health fairs occur simultaneously, and you may sometimes feel ‘pulled’ to make decisions on where you spend your time, your energy, and your money. But you have choices, and the choices are yours. Go one year to this event, next year to another. Don’t get frustrated with what is or is not happening or is on conflicting dates; make a choice and run with it. You will always have another choice to help where YOU WANT to help, when you want to help.

Here is the trade-off. In as much as there is not just one universal diabetes organization, you have many choices on where you spend your energy. What is important to you? I have stated many times to not get involved in one organization OR another; but rather get involved in one organization AND another (and maybe AND another).

So to the woman who asked the original question, and I thank her for asking, I answer this way: we have so many choices out there to help those with diabetes; if there are almost 26 million people with diabetes in this world; and if each person along with two loved ones impacted by diabetes did just one thing to help, over 78 million people would be doing something right now to help in the ‘diabetes movement’. And further, if each of those people gave (or raised) just 100 dollars annually; it would be more than enough to accomplish every single goal out there.

SO my questions is not; how do we achieve one diabetes organization?; but how do we get more people to help because more do not help; than do. And THAT IS something we can all do something about, and we can start right now by asking the person in the mirror. Just ‘don’t do nothing’.

I am a diabetes dad.

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