A Chance to See/Hear an Absolutely Incredible Story……In His Own Words!!!

PR 2014 Part of the ‘year-end-campaign’ for funding the Diabetes Research Institute and in recognition of Diabetes Awareness month, The Diabetes Research Institute Foundation (DRIF) created this video which highlights the story of one of my most respected heroes in this diabetes fight: Michael Otten.  Michael chooses to NOT do NOTHING.  In addition to his huge generosity, his story from 9/11 is unbelievably compelling.

Whether you choose to give or not is your call, but you will truly find his story fascinating…..click the picture above or click here to take you to the DRIF page with Michael’s incredible video…….in his own words.

I am a diabetes dad.

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

 

Celebrities Should Help with Diabetes Causes…….Uhm……They DO!!!!!!!

Vip Clip Art and Stock Illustrations. 4,576 Vip EPS illustrations and ...When people help us, it should never be forgotten. 

I have often read comments from people in the diabetes community about how they wish people, celebrities, would do more to help.  The truth of the matter is that there are quite a few. 

Of course we always believe that our diabetes concerns should be front and center but it is a big world out there and only limited space for so many causes.  Let’s take a look at just some, and a BIG ONLY some, of the celebrities and how they have helped in various causes.  Without question, the leading celebrity voice for diabetes causes is Mary Tyler Moore. 
(In all of the examples below, click the picture to see the short video.)Commercial MTM

Ms. Moore’s efforts on behalf of the JDRF span the decades but she was not alone in assisting diabetes causes and there have been many.  Ever see this one with Sandra Oh, Nicole Johnson, and Brett Michaels to name a few.
test don't guess

Are there any Ray Romano Fans out there?

And for you boxing fans; Sugar Ray Leonard.
Sugar Ray Leonard Helps Knock Out Juvenile Diabetes | Type 1 Diabetes ...

He not only did this PSA for the DRI (actual website is www.DiabetesResearch.org) but also did them for JDRF.

And music sensation, Nick Jonas, did much work for many organizations, here is his PSA spot for the American Diabetes Association along with Jay Cutler’s spot as well.
Nick Jonas PSA

jay cutler football
Many celebrities from sports and entertainment attend events on our behalf, testify before congress, lend their names and their time to attend events, donate money (many times without any fanfare), and even perform, as is the case tonight in Miami where music icon Barry Gibb will be singing some of his top hits from the Bee Gees at the DRIF’s Love and Hope Ball for almost 800 people.

This is but a sampling (and surely not a complete) of an ever-growing list that includes others like Ray Allen and his family, Olympian Gary Hall and Kris Freeman, other football greats Kendall Simmons and Vince Wilfork, race car driver Charlie Kimball and there are many, many more of which I have not forgotten, but only used a sampling to show that so many DO INDEED care; and help. Feel free to add anyone you want to mention as a reminder to everyone else.

We surely would love for many more stories in the news and the media to center around diabetes and surely we would like the list to grow, and the stories be more plentiful, but we should also recognize that many do much.

And we all surely appreciate it………don’t we?

I am a diabetes dad.

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

 

A Bee Gee, and an Incredible Moment which I will Never Forget.

Tom Barry Love and HopeHe is a superstar.  A mega star.  A golden voice, an incredible writer, and a friend fo the Diabetes Research Institute.  He will be performing this year, which he does from time to time, at our Love and Hope Ball next month.

He is getting ready to tour.  He was on Saturday Night live recently.  He is making the circles around the talk show circuit.  He mentions the DRI when he can.  He and his wife, Linda, believe in the mission of the DRI.  He was very close to Marty Kleiman, one of the founding families of the building which stands as a beacon of hope for all of us waiting for a cure of this dreaded disease.

I did not know Marty, I have been told he had incredible drive, a wonderful sense of humor, and the ability to make anyone feel comfortable when he was in a room.  He lost his battle to cancer and his family’s efforts are surely engrained in the fiber and heart of the DRI even today.  His son, and my colleague, Gary is one of the most knowledgeable people I know in the research world—he IS THE go-to person when something comes across my path of which I had not heard about.  Gary has had diabetes for a long, long time.  Yet he still has such a high hopes for a cure.

Some have become cynical about the cure, and that is surely their right.  I know so many have heard of ‘this cure’ for so many years that they have become jaded.  Some have just resigned themselves to the fact that if it comes great, but breathes will not be held waiting for it.  The promise broken too often.  It certainly is understandable.  But I cannot be that way.  Seems, neither can Gary.  Neither can so many more.  There is a reason we believe in the DRI even though so many of us have come from so many different walks of life in our diabetes journey.

It is not only what I have seen myself,  but when I see the DRI through the eyes of so many people who; ask the tough questions, who get involved because they too believe, have toured the building, who understand the science and say, “…the DRI gets it…..”, and so many who lend their talents, their money, and in cases like Barry Gibb; even their well-known and good name to the place that means so much to so many, that continues to inspire me.  Why would they be involved unless this place was so special?  Why would I? 
Many well-known people have inspired me with their incredible work to no end but it was a chance meeting two years ago that also showed me an incredible compassion as well.  Barry’s brother, Robin, was so very ill with cancer.  At the same time, my brother-in-law was also extremely ill with cancer.  Within months of our meeting, both of our loved ones would lose that painful battle.

Through a series of twists and turns, we ended up together back stage.  We talked about the brilliant concert he had just given at the DRI’s Love and Hope Ball.  I thanked him for giving such a great concert.  I said I knew a lot was going in his life and I appreciated his support for all of our kids with diabetes, even though his own family’s health battles were well-known.  He informed how grateful he was to once again be with us.  He also shared that he was surely concerned about his brother and I told him about my brother-in-law, Joel.  We talked a little bit about what we each were going through; and that will stay between he and I.

At the end of the conversation I thanked him, and we hugged.

Yes, hugged.

I have found that for most people, no matter their status in life, the connection of an incredibly shared human moment is something that transcends everything else……even if it just happens to be with one of the greatest icons in music history.

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.

Camillo Ricordi at Microscope….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’.

Do Kids with Type 1 Deserve to have a Wish Granted by Organizations?

Magic wandYears ago I had the wonderful experience to help two different families at two different times.  Little Anthony and Kevin both had cancer, incurable cancer.  The results were known and even though both gave a valiant fight and underwent almost every treatment available, eventually the battle was lost.

With each day that went by I witnessed their lives slipping away and even to witness them smile at their weakest moments were enough to brighten a day.  When a fund-raiser was completed and a check was presented I can still to this day hear Little Anthony’s (as his parents called him) voice in my head, “Damn, that’s a lot of money.”

When Rob graduated, I thought of Little Anthony’s family as they were both the same age and surely we have had the wonderful opportunity to witness and enjoy our son, they were not so lucky.

Years after I ran the event for Kevin, a woman stopped me in a 7-11 and she said, “Tom, you may not remember me.  I am Kevin’s mom and you helped us years ago.”  We hugged and she told me what was going on in her life and how much she appreciated all that we did. 

We were never experienced in any such way that compared us to what these families went through.

If you do not know about the so many pediatric cancers, count yourself lucky.  When it’s a terminal, malignant, progressive, and degenerative diagnosis; it is just overwhelming to watch, witness, and share.

I remember someone asking me about one of the organizations that grant a wish for kids with such diseases that Kevin and Little Anthony suffered with and if I thought kids with type 1 diabetes were eligible.

I answered ‘no’ immediately.  I answered no because I felt that if anyone on this earth wanted and/or deserved a wish to be granted; it would be these two little boys and their families.  I’m not comparing diabetes to cancer, and won’t.  But in as much as I completely understand what it is like to have two kids with diabetes, and I know all of the management needed; and know the fears; and just completely understand; I would never think for a moment that what we do on a daily basis was the same life threatening and terminal situation that would warrant a utilization of a granted wish.  Most important is that NO ONE ‘DESERVES’ anything; they are granted at the goodness of the person or organization granting them.

To me, TO ME, it just isn’t.
 
Is diabetes life threatening.  Yes it is.  Is it a life threatening terminal disease with no chance at a quality of life as others have?  No it is not.  

Now one can pick apart the words as life threatening and/or quality of life and try to make it a crystal clear-cut meaning but the truth is—-it isn’t crystal clear.  My kids do not have a life-like kids who do not have diabetes and neither do we as parents.  But we also do not have the same life as those who are literally dying with each day that goes by; they are not growing weaker with each day that goes by; they are not on a time-table that will snuff out their lives in six months.  Yes, I know that IT COULD be snuffed out; but it is not a predictable end.

Again, recently, someone asked me if I thought that our children are ‘deserving’ of a granted wish?  I  found that some parents were quite set in their thought process that an organization should be granting wishes to kids with type one diabetes.  No they shouldn’t.   Why?  Because they said they shouldn’t.

Now before some of you want to hang me; just keep reading until the end.

There is a Board of Directors that have set a criteria for these type of organizations and Make-a-Wish is only one of many such organizations.  But it is clear that if a child does not have a progressive, malignant, and degenerative disease; they do not qualify for a wish.  Quite simply; our kids do not.

There must be a line drawn that allows a gauge to decide who gets a wish and who does not according to the various groups I spoke to preparing for this article.  That line in the sand is not an easy one.  It is drawn because there MUST BE a divide and no matter where THAT DIVIDE is set, someone will asked it to be moved once again.  So most groups draw the line and do not move it.  It is not for a lack of compassion, it is an act of practicality.

Another commonality from the organizations is that there are not enough funds to grant all of the wishes that they would like to grant to those that fit the criteria they have set, much less trying to stretch the parameters to include additional children living with other diseases.

I’m not saying what our children live through is not horrendous, I’m saying organizations have the right to set their own criteria and it should be respected. Almost any group that is created, or has been created, was started because the group felt that the existing organization(s) did not fulfill the need adequately on what they found/deemed to be important.

So if you believe, and believe strongly enough, that children with type 1 diabetes should be allowed to request a ‘granted wish’, I would suggest that you begin such a group.  There are groups that create wishes from a life experience to supplies to clothing.  Why can there not be one for diabetes?  That is question for you to answer.

Kids with diabetes, in most cases, are not adequately considered for a college scholarship based on a disability.  Those that grant these scholarships grant them based on those who have overcome incredible odds; sounds like our kids doesn’t it?  But alas they are not considered in any place that I know of giving scholarships based on overcoming a disability; and feel free to enlighten me if I’m incorrect.

With that in mind, the Diabetes Scholars Foundation was created.  Guess what their number one criteria is?  Yup, you must have type 1 diabetes.  Now they could have spent years trying to get groups and organizations to grant a scholarship; or they could do something about it NOW.  In 2008 they gave 18 scholarships and in 2013 they gave 49.

So the point of my story today is not just about whether kids with type 1 diabetes are deserving of a granted wish; my point is that here is an opportunity to fulfill a need if you think it  is needed strongly enough. 

Years ago there was the American Diabetes Association; Lee Ducat thought there should be more focus from an umbrella organization to fund type one research; and she and her friends created (what is now called the) JDRF.  Barbara Singer and her friends believed that there should be place where actual science was being done solely dedicated to curing type 1 diabetes and they created the Diabetes Research Institute.

So if you think that something is not being done that needs to be done…….make that wish come true.

I am a  diabetes dad.

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

A GIANT Steps Down: Bob Pearlman President & CEO of the DRIF

CWD 2011 Bob P and TomIt is with huge mixed emotions I share the following news.  Below is the press release as stated by the DRIF.

My boss, my mentor, and my friend—-there is not one single parent or person with diabetes who should not be grateful for the work Bob has done over the past 20 years..

I will write more in the near future but for now I say best of everything Bob, you surely deserve it.

We will stay driven.  We will stay focused.  We are in it to end it.

Diabetes Research Institute Foundation President and CEO Robert A. Pearlman Stepping Down After 20 Years

HOLLYWOOD, Florida — May 20, 2013 – After successfully leading the Diabetes Research Institute Foundation (DRIF) for two decades, Robert A. Pearlman, 67, of Boca Raton, FL, announced that he will be stepping down from his position as president and CEO effective June 30, 2013.

Mr. Pearlman was recruited to the DRI Foundation in 1993, after a 25-year career in the fundraising field, to increase funding for the Diabetes Research Institute (DRI) at the University of Miami, the sole beneficiary of its support. During his tenure, the Foundation and the DRI experienced exponential growth, developing into one of the premier diabetes organizations and a recognized world-leader in cure-focused diabetes research.

Under his leadership, the DRIF has raised approximately $300 million dollars and, in the process, became the largest contributor to the University of Miami in its history. Mr. Pearlman presided over three consecutive five-year campaigns which increased fundraising more than 15 percent per year. When Mr. Pearlman steps down at the end of this fiscal year, the annual campaign will close 13 percent over this year’s goal and up 34 percent over last year.

“We thank and honor Bob for his tremendous service for the last 20 years. He built the Diabetes Research Institute and Foundation into a world-class institution and has made a tremendous impact on shortening our timeline toward the discovery of a cure for diabetes,” said Harold G. Doran, Jr., chairman of the DRIF’s National Board of Directors. “Bob is leaving us in a strong and exciting position to move toward our goal of a cure and continue our momentum after unveiling the DRI BioHub earlier this year.”

“It has been an incredible privilege and personally gratifying for me to have led the DRI Foundation for the last 20 years and to have worked side by side with Dr. Camillo Ricordi, director of the DRI. I’ve been surrounded by an incredible team at both the Institute and Foundation, many of whom have been at the organization even longer than me. I’m confident that with this team in place the mission to cure diabetes will be achieved,” said Mr. Pearlman.

DRI Foundation Chief Operating Officer Deborah Chodrow will become acting president and CEO on July 1, 2013. She will serve in this capacity as the organization conducts a national search for a permanent successor. Mr. Pearlman will remain a consultant to the Foundation for a period of time to ensure a smooth transition for his successor.
Complete link:
http://www.diabetesresearch.org/DRIF-President-and-CEO-Robert-A-Pearlman-Steps-Down-After-20-Years

I am a diabetes dad.

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