Define. Your Thoughts and Input Needed.

dictionaryI have received many emails and one person wrote, “I would be interested to read what others consider as their definition of a cure?”

Fair enough.

Very simply put:  Please share what a cure means to you? 

Please share here on the blog and not on the FB post because it is posted in many different places.  Thank you. 

I am a diabetes dad

I was Asked, I Answer. How About You?

cure definedI was asked by someone recently what a cure looks like to me?

She writes, “Is the cure you visualize one without side effects, complications and risk. Does it restore normal beta cell function in some way? Does it involve an operation? Will they need any other medication? Will the cure last or will they need repeated cures?”

First of all I believe that there are two separate categories.  Treatment.  Cure.  I think the line has been blurred over the years.  I think the line should stay crystal clear.  The reason I believe this point is that the emphasis on one has possibly made people think that ‘this_________ (whatever)’ WILL, absolutely make life so much better for people with diabetes.  Better is good and with some things better is FABULOUS.

But back in the days when insulin was discovered, people began touting what was a cure and what was not.  One could make the case statement that insulin surely keeps people alive so it could be a cure.  When it was discovered, many stated it was a cure.  Today, looking back; is it?

But I was asked what I thought.  I, one million percent, think in the present that management is extremely crucial and ANY AND EVERY tool should constantly be improved upon so those with diabetes have all that is needed.

A cure, to me, will be when the monitoring of diabetes and the worry of diabetes is no longer an issue.   The cells that did work, work again and there are no side effects to that end.  If it is something that has to be done every few years, I would be fine with that BUT, I don’t have diabetes.  I answer as my fears and my woes are satisfied as a parent. 

Over the years I have heard so many with diabetes state that greater management tools is the more logical wish because the touting of a cure has gone on so long and the promise broken so many times.  Many just don’t believe a cure is a realistic view-point.

And that saddens me.

As I stated, I can wish for or believe what I want, but I don’t live with it.  I have taught myself to listen to the voices of those who speak from experience and the research world needs to hear them too.  When those living with diabetes believe that modern advancements in tools for management is the better bet for their dollar on wishes; well it should be a wake-up call to the world-at-large looking for a cure.  People want to be shown, not told.

There is not a person in this world who has diabetes who will not tell you, “Sure I want a cure.”  But those who live with it, are not mice.  Show them what you have, because saying it just does not do it for them anymore. 

This goes for the advancements in management tools also.  Do not ‘string people’ along.  If you’ve got it, share it.  If you do not have it, and know you never will, stop it and spend your resources with those who can get us all to the finish line.

I have seen science that is not shared, not substantial, not really anywhere, and they are fooling so many who want it so desperately. 

When asked why am I hear at the DRI, I answer that today with a Facebook post from the man who heads the institute, Dr. Camillo Ricordi……..and he and his colleagues live by it.  He quoted Bertrand Russell:
Never cease to disagree, to ask questions, to question authority, clichés and dogmas. There is no absolute truth. Do not stop thinking. Be dissident voices. Be the weight that tips the floor. Always be informed, but do not lock yourself into knowledge, because knowledge is also a weapon… 
A man who doesn’t disagree is like a seed that will never grow. 

And if whoever you believe in cannot live up to this…..run, don’t walk, away.

I am a diabetes dad. 

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

I Know Where My Heart Belongs…..Do You????

Islet cell heart editedHappy Valentine’s Day. Those who know, know they have my heart.  But the islet cell picture in the shape of the heart, that I posted today, was discovered by one of the Researchers at the Diabetes Research Institute (DRI) and given to the world to use.  That simple gesture of sharing with the world is indicative of the reason that out of all the entities out there, that I could give my energy, my heart will always belong to the DRI.

Those who know me also know that I am very supportive of  many entities, organizations, and projects.  My mantra of ‘don’t do nothing’ is well-known in the diabetes community.  I respect whatever anyone else chooses to support.  Recently a good friend asked me, “Why do feel so strongly about the DRI?”

Years ago, when DRI was really just beginning, I was approached by a colleague at a conference who was a regional director in the Florida area.  Jennifer approached me and stated that she knew many people from the Long Island area were looking at the DRI and asking a million questions.  “What do you do?  How do you stop them?”  I smiled at Jennifer, who was also a mom to a child with T1, and I said, “Jennifer, I tell them to go.”

My thought has always been that we need to continue to look for the answers we seek, never to be so connected to a place that if another one doing a better job comes along, that you would not look to FIND THE ANSWER.  In our life, the single most important factor in our lives is to find a cure for our two children.  Second, a close second, is to have the knowledge of everything out there to keep our kids healthy.  But the leader is a cure.

There is not one single entity our there more dedicated to finding a cure than the DRI.  To this day I have never seen or been introduced to anything like it.  Yes, I work here.  But I have worked at other diabetes-central places before and I would change again if someone showed me a better place to be.  The scientific findings at the DRI are known throughoutthe world.  What they have been part of has changed the diabetes world of research like no other place.  And it continues today.

I know there are scientists out there doing work that is capturing the imaginations and the hopes of many.  I know most of them and some could be very helpful.  When someone says to me, “what about so-and-so” my answer is always the same; “Go and ask them if they would be willing to work with others, to share, to speed up their results, if it is no, then don’t waste your time.”

I learned that from the DRI.  The DRI shares with centers all around the world in a collaborative effort second to none.  It is this effort of sharing and connecting, as well as the brilliance of the findings that keep me here.  But if you know some place better please let me know.  But they must pass the litmus test: Is the science real; do they collaborate; do they share; is it on the pathway for a cure.

Now I also know there are those out there saying we need to put a timeline on the scientists to find a cure.  Not so.  Does anyone remember the decade for a cure in the 90’s; the battle-cry was that a cure would be found by the end of the 90s but that came with a PR slant only; and much of the real science out there was not even being entertained for funding.  So be careful on timelines…..been there, done that….and it broke my heart.  DIligent?  Absolutely.  Focused? Absolutely.

The DRI is a group of scientists that share with each other, share with the world, and whether you have a million dollars or run an event that raised $50; you are part of the DRI Family.  Each person is as crucial a step on the pathway as the scientists themselves.

It is no secret to anyone that Lisa Treese is without a doubt one of my favorite people on this living earth.  She is a mom who does what she can.  She was not happy with what she saw in her community and she searched, and she searched, and she searched and how lucky for the DRI that she gives so much time and effort.  I will never forget when Lisa and her mom toured the DRI and her mom called me afterwards and said to me, “That was staged, right.  I cannot believe that is how they treat everyone who visits and tours the DRI.”  It is how we treat every one—simply put, one is, or is not.  The DRI is.

It is also no secret that another favorite person on this earth is Bonnie Inserra and her family.  They have worked hard in life and they share generously with both their time and their support.  You see, these two women, myself, like so many more have ‘touched and seen the DRI in action’.  All work diligently for one reason, to turn out the lights because the job is done.

That is why I share with you on this Valentines Day, that when it comes to diabetes, my heart belongs to the DRI.  If you want to be updated on research, I do not want you to change anything in your lives, but if you want to stay updated on worldwide happenings in diabetes research I urge you to become a DRI Insider by clicking here.

There will be a cure for diabetes, I’m sure of it.  And the DRI will be part of it.  For me that is worth giving both my soul and my heart.  Happy Valentines Day.

I am a diabetes dad.

ll

Yes Virginia, There Will be a Cure! A Take on a Classic Tale for a Diabetes Cure.

In answer to all of the postings I have recently seen from children asking Santa for a cure, today, with apologies to The New York Sun, I dust off an old article I did for dLife and respond to a letter from a young lady who asked a simple question during this holiday season. Her name is Virginia and she asks simply, “Is there a cure for diabetes?” 

Dear Diabetes Dad,

I am eight years old and I have type 1 diabetes.
Some of my little friends, and others, say there is no such thing as a cure.
Papa says if you see it in an article from Diabetes Dad, it’s true.
Please tell me the truth, will there be a cure for diabetes?
Your friend,
Virginia 

Dear Virginia,

Virginia, your little friends — and others — are wrong. 

They have been affected by the skepticism of a skeptical day. They do not believe except what they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men’s or children’s, are little. In this great universe of ours, man is a mere insect, an ant, in his intellect, as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole truth and knowledge.

Yes, Virginia, there will be a cure for diabetes. It exists as certain as the results from love, and generosity, and devotion exists, and you know that these results abound and give you the highest hope and joy. Alas, how dreary would be the world if there were no hope for a cure. It would be as dreary as if there were no Virginia. There would be no childlike faith then, no wishes, no challenges of those searching for a cure, no hope to make living with diabetes tolerable. The light at the end of the tunnel, for which children and their parents constantly seek for the world, would be extinguished. 

Not believe in a cure? You might as well not believe in science. You might get your papa to hire men to watch every bit of science all over the world. And even if they did not see the cure actually coming, what would that prove? Nobody can be everywhere all the time to see a cure coming. Just because it isn’t here today, does not mean it isn’t coming. The most real things in the world are those neither children or men (or women) can see right before them at the time they ask for it. Did they know that a polio vaccine would work? Did they think a heart could be transplanted? These were things that people never saw coming and now they are commonplace. Nobody can conceive all the wonders there are unseen and unseeable in the world. 

You may tear away the baby’s rattle and see what makes the noise inside, but there is a veil covering the unseen world, which not the strongest men, nor even the united strength of all the strongest men that ever lived, could tear apart. Only faith, dedicated work of science, and collaboration can push aside that curtain and view and picture the glory beyond. Is it all real? Ah, Virginia, there is nothing else as real and abiding. 

No cure? Thank God the hope lives and will live forever. A thousand years from now, Virginia, nay, ten thousand years from now, people will look back at this time of hope in the heart of a child. A child named Virginia, who always believed there would be a cure. May we all have the heart of Virginia and may all who seek the cure know the importance of the work they do to help all the Virginias of this world. 

Yes, Virginia, there will be a cure

Happy holidays to all and to all, a good night.

Your friend,
Diabetes Dad

A Brother’s Christmas Wish for his Sister…..and an Answer that will Touch Your Heart.

I share this with you in the spirit of the Holiday Season.  It is just an incredible Holiday wish that came to me via a mom.

Thirteen-year-old Jeremy asked his mother if he could talk to Dr. Ricordi in private. 

Dr. Ricordi of The Diabetes Research Institute, as so many know, is one of the leading scientists in the world regarding diabetes.  He has created a world of collaboration second to none and it is his drive, talent, and collaborative spirit, along with the same from all of his colleagues, that has given parents hope that some day there will be a cure for diabetes.  This mom, and her family toured the institute and met many of the scientists. It was these up close and  meeting with individuals at the DRI that gave young Jeremy the impression that he could speak to Dr. Ricordi about something very personal.

Jeremy’s mom, Betty, was of course curious, and asked her son why he needed to speak to Dr. Ricordi about something personal??   Her son Jeremy, who does not have diabetes, wanted to see if he was a match for his sister Shelby.  Turns out that he thought he might be able to donate his pancreas to his sister for Christmas so she would not have diabetes anymore!

The young man with a heart of gold was informed by his mother that even if such a thing was a feasible ask; it would mean that he would then have diabetes.

His answer was enough to shake a mountain.

“I don’t care”, he said. “I just don’t want HER to have it anymore.”

The mother and son cried and hugged when he found out it
couldn’t be done.

The mother closed her note to me stating, “Maybe…..someday….typing through tears here. :( .  Hugs to you and the family.”

When I received that message I felt obligated to share with my colleagues at the DRI.  In a very, very short time later, I received the following from one of the greatest minds on this planet in the diabetes research arena.  He was answering the mom personally.

Dear Betty,
Tom shared your message with me and I will be of course delighted to speak with your wonderful son Jeremy and explain to him how we will find a cure for Shelby without having to use his precious pancreas …
All the best, Camillo 
(He then gave her some dates he was available to speak)

Merry Christmas to all and to all a good night.

I am a Diabetesdad

Santa Will Send Your Child a Personal Letter……..You’ll Help Find a Cure.

If if you do not have children for this incredible program…..it’s the holidays, help take us one step closer to a cure.  

SANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday fundraiser benefits Diabetes Research Institute Foundation


New York, NY (November 23, 2012) – Yes, Virginia (and Emma, and Maria, and Max, and Willie…), there is a Santa Claus. To prove it, ‘Ole Saint Nick himself will send a personalized letter – complete with a North Pole stamp – to any child, in any part of the world for a minimum $15.00 donation to the Diabetes Research Institute Foundation. This jolly holiday fundraiser kicks off this year on Friday, November 23rd at www.SantaClausDRI2012.org and is certain to light up faces brighter than the star on the tree.   

(Kids from last year holding their letters)

The personalized letters, which can be sent by parents, grandparents, aunts, uncles or any other family member or friend, can include all kinds of information, like a reference to any toy, game, iPad or techno-gadget on the child’s wish list or whether he/she has been naughty or nice this year. Santa can even tell them that he knows how well they have been managing their diabetes. The fundraising campaign is open to all families everywhere, not just those affected by diabetes. However, with almost 26 million Americans affected by the devastating disease, it is likely that almost everyone knows someone with diabetes.

To get the hundreds, even thousands of letters out to children by Christmas day, a legion of Santa’s “elves” are standing by around the country, according to volunteer chairwoman Marie Jarcho.

“We had a tremendous response the first time last year. This is a wonderful and easy way to brighten a child’s Christmas and they loved it. The more information that parents or others supply on the website, the more personal Santa’s letter will be,” she said. “As a mother of a son with type 1 diabetes, it is my hope that people will give what they can to help the Diabetes Research Institute find a cure.”

After the event last year, one mother wrote that her child was so thrilled with the personalized letter that she slept with it every night until Christmas. The DRI Foundation is hoping for a greater response this year.

“This initiative is all about making children happy by receiving a personal letter from Santa Claus. We also know that during the holidays, millions of children and their families affected by diabetes wish for a cure. Our goal is to make that wish come true, and we’re grateful to be able to move a step closer with the funds raised through fun programs like this,” said Robert A. Pearlman, president and CEO of the Diabetes Research Institute Foundation.
To send a child a letter from Santa Claus, visit www.SantaClausDRI2012.org.  The deadline for participation is midnight on December 18th.

 

PLEASE REPLY AND LET THESE SPECIAL PEOPLE KNOW HOW MUCH WE APPRECIATE THEIR EFFORTS!

They are doing it for your kids, for mine, for theirs.  They are doing it for a cure; they are doing it in memory.  They are doing it with incredible fortitude.  They are doing it with painful memories.  They are doing it with incredible hope.  They are pushing their bodies to the absolute physical limit.

 But they are doing it.

 While we are all home in the comforts of our lives today, a large group of people are in Death Valley riding.  Riding and raising money for the JDRF.  Riding and raising money for all of us.

Through pain and anguish they will ride the 105 miles at 282 feet below sea level, the lowest point in the western hemisphere.  They have designated miles like the now famous Mile 23; for Jesse.  They ride around 300 strong to test the heat, the sun, the wind.  They challenge themselves. They challenge the elements.

But they challenge much more. 

They challenge that the funds they raise will indeed be put to good use.  They challenge fate that although they may have lost a child to this battle they will do all they can not to let it happen again.  They challenge the scientific world to see that they will inflict all sorts of personal pain so that money may move us one more pedal closer to a cure.  They challenge us all to pause today and realize that a group of people out there are attempting something we are not and may never do.  All for but one reason; diabetes is just unacceptable. 

Godspeed my fellow colleagues in this fight against diabetes,  We will think of you today.  We are thinking of you NOW.  Be safe, be well.

That finish line is so much more than the end of a bike ride; for that we thank you. 

LET THIS POST SERVE AS A GREETING CARD OF THANKS FOR ALL OF THEM UPON THEIR RETURN.  PLEASE LEAVE A REPLY MESSAGE OF THANKS ON THIS POST TO THESE INCREDIBLE RIDERS SO WHEN THEY RETURN HOME THEY CAN SEE HOW MANY PEOPLE  SAY THANK YOU.

I am a diabetesdad 

 

PORKED!–Pig Insulin, Pig Islets, Pigskin, & a Pig Roast—A VERY PIGGY DAY!

Michael Otten (far right) with Vinny, Robert (and Gigi) were up bright and early organizing their PIG ROAST 2012 to benefit the Diabetes Research Institute and the Children with Diabetes Foundation.

After I spoke with him this morning I had this thought of the irony of an event to end diabetes and the connections.

Many of you may not know this but years ago insulin was made from pork.  We certainly have come a long way since we had to give Kaitlyn those shots.  One of the biggest challenges with curing diabetes is having enough islets cells when that procedure is perfected for our kids and a solution being touted right now is purified porcine (pork) islets.  Michael and I are huge Jets fans (hence the pigskin) and today over 200 people will gather throughout the day at The Otten’s annual pig roast.

Now there are a zillion different fund-raising events through out the United States but I have to admit, what Michael, Gigi, and family and friends pull off here is truly one of the truly unique events out there. 

A PIG ROAST.  Really?

A full brick coal-pit and a roasting pig and more food and drink than you will ever see in one place at one time.   People all through the United States give so generously to so many different diabetes organizations.  The volunteers.  They amaze me with each and every event I am fortunate to attend.

Toady at a Pig Roast on Long Island–I will toast to all those who ‘don’t do nothing’…..to benfit those who live with diabetes everyday; to thank them.

Toast to a cure…..and there is nothing piggy in wishing for that, is there?

I am a Diabetesdad.

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.

 

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.