The Time I was Part of NY’s Famous Easter Bonnet Competition

So every year about this time, my heart goes deeply back to my roots of the NY Theatre scene.  For it was the NY Theatre scene that, in essence, readied me for a career I am now in, fund-raising.  True, I wear a few hats, but at the end of the day fund-raising for the Diabetes Research Institute, to help find a cure for my two kids and the millions like them fighting diabetes is my end game.  My Goal.  My Passion.

But back when, living in a care-free world, my life was the Theatre.  My family was very young and there was no diabetes.  Nancy Cassaro, one of the creators and stars of the New York smash hit, Tony ‘n Tina’s Wedding, came to me and said we have been invited to partake in the Broadway Cares Equity Fights Aids Easter Bonnet Production.  Back then, the event was in its infancy.  But it was a good, no….a great, idea.

Broadway shows competing with skits, an Easter Bonnet, and fund-raising to help those battling aids.  I knew quite a few people who lost this battle and those who live with it, still.  So being involved way back when was a passion but with a huge amount of work and great fun.  And there have always been pretty big names involved in this event over the years.  Pictured are Babe Neuwirth, Nathan Lane, and Catherine Zeta-Jones from the 2010 event.

For six weeks, shows in New York and on tour raise money with everything from signed posters, meet-and-greets with the cast (including some big names), signed memorabilia, live on-stage auctions, and of course the ever-famous bucket collections at the end of each show.  In the short time since its inception, The Easter Bonnet Competition has raised over 87 million dollars with their efforts.

So way back when, again, Nancy asked me to come up with fund-raising ideas.  And working with the cast, we came up with some really fun ideas.  In the genre of our show (a wedding, but not really) we created a telethon, but not a real one.  Right after our show was over on Sunday, we changed our space into the telethon TV studio.  So much detail right down to a phone bank with phones ringing on a recorded loop so all through the night phones were heard ringing.

We created hours and hours of entertainment, including a TV camera for ‘broadcast’; and all-night long people paid to come in and watch whatever it was we were doing—-even in the wee hours.  It was crazy, it was original, it was exhausting and it was one of the most rewarding nights of my life.  This was our big fund-raiser and we also did bucket collections after each night of our actual show.  When it was time for the big Easter Bonnet competition—ours of course was a huge wedding cake-bonnet, being onstage with all famous Broadway folk, well it was cloud nine.

So it has been 30 years since we did that, and I was a mere 31 years of age.  The Broadway community continues their efforts and now of course, they raise millions each year and this year (today in fact) alone was over 6.5 million dollars compared to the couple hundred thousand raised, when we did it.  This year, my dear friend Billy was director, a writer, and a designer of one of the bonnets.

So many times we hear people trying to come up with new ideas to raise money for causes.  It’s just so impossible, right.  But yet, years ago, our little show was up against all the Broadway mega shows like Les Miz, Cats, Phantom and many more.  But we had a good idea and good people coming together for a cause we believed in and when the money was counted that year, Tony ‘n Tina’s Wedding was one of top fundraising shows of the Easter Bonnet Competition.

A few days after the event, we were back at the theatre, or ‘ the space’ as we called it,  and Nancy came in and she gave me a package.  She said, “you deserve this”.

Puzzled, I opened the package and it was the award they gave her for our fundraising efforts.  I was humbled but so proud and the feeling was just incredible.  I will never forget that feeling.

Years later, I would enter the fundraising world.  Kaitlyn would be diagnosed with t1d and my energy would go toward finding a cure.  I dream about that day.  I do believe with all my heart that we will get there.  And that award would be a million times more than what I felt when I first received that Easter Bonnet Competition Award…….but my next award will be a cure.  No award, no frame, no trophy……..just a cure.
And the curtain will close on diabetes.
I’m a DiabetesDad
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Congress A+…….But PBMs and Insulin Companies, it’s the SAME Routine

Soooooooooo I listened to the The Oversight and Investigations Subcommittee recording of the meeting held today, Wednesday, April 10, at 10:30 am on The Hill. The hearing was entitled, “Priced Out of a Lifesaving Drug: Getting Answers on the Rising Cost of Insulin.” Once again, you can click the link to see the hearings yourself (remember that there was a vote which delayed the start and you must slide the video cursor to about 1:53:21 for the actual start of the hearings.–Know that it’s a long hearing)

This was the second part of the hearing from last week, you can read my article from last week by clicking this link.

I finished watching the hearings and to be honest, I placed my hands on my face and screamed until tears flowed down my cheeks.  Literally.  My stomach hurt.  My head hurt. The witnesses, who were sworn in under oath and all waived the rights to legal counsel, were from Insulin companies: Lilly, Sanofi, and Novo and PBM (Plans Benefit Manager)s represented were CVS Health, Express Scripts, and OptumRx.  These are the giants among the giants in all insulin supply and pricing.  The names of the individuals matter little in the scheme of things but know they were all from the hierarchy of these companies and spoke on their behalf.  I will be referring to the company name just to try to make this a tad easier to follow.

Chairwoman Congresswoman Diane DeGette (a mom to a daughter with T1D) relayed a heartfelt opening reminding the witnesses that the Committee heard heart-wrenching stories the week before from witnesses whose theme was universal; The present system in pricing of insulin is opaque, non-transparent, and no longer represent the patients best interests. She further challenged that the goal was not to unjustly blame but rather, what can be done to fix the current situation.

I think we might get further if we were to just blame.

It was clear that the line in the sand had the insulin companies on one side and the PBMs on the other.  I listened as each one stated their case so matter-of-factly, as if this is the way it must be.  There is a ‘formulary’ (the list of medicines) that is presently in place by the PBMs. Rebates, discounts are all based on these ‘formularies’. (I wish these people could have heard themselves talk).   Depending on what discounts and rebates are given in these ‘formularies’ dictate the price you pay for your insulin.  A generic insulin cannot be introduced because it would throw off the ‘formulary’ that is now in place.  In a nutshell (according to the manufacturers), manufacturers cannot add lower priced insulin to the market because the PBMs will not allow those insulin prices to be included in the existing ‘formularies’.  The PBMs stated that it’s the system in place that prevents them from doing anything.

Congressman Walden from Oregon asked the Insulin Companies if generic insulin was being prevented being part of the ‘formularies’ as a decision made by the PBMs?  The answer was, ‘Yes’, from the insulin companies.

Dizzy yet……yeah, me too.  It was like watching the Who’s on First routine.  (click the link to see it, for what it was supposed to be back then, it was very, very funny) The routine made famous by Abbot and Costello that no matter how much is said, you end up right back in the same place……………………..not fully understanding anything.

That describes what I saw.

And yet, all six representatives touted what incredible discounts the patients were given and how much they had done for those who were in need.  This created a stir and responses like the one from Congresswoman Schakovsky from Illinois who chastised all of them because giving the ‘breaks’ they all stated allowed each companies tax incentives for doing it.  Loudly she stated, “Tell me I’m wrong!!!”  No one spoke up.

When Congressman Ruiz from California asked, “What will each of you be willing to give up to make insulin more affordable?”, and when the answers started to sound like prepared statements on what is done for those in need, the Congressman shut it down, “Your solutions have not worked.  Theoretic reasoning is not helping the patients.”

The representative from Sanofi was being challenged again, and again, and again, on savings by Congressman Kennedy when the rep started, “We announced today…….”  “TODAY?????” Mr. Kennedy cut her off—-“Today????……being before congress…….”
Congressman Kennedy (his passion reminded me of his Great Uncle, Ted Kennedy, who was known as lion on healthcare issues) crossed his arms and stated that both sides have to stop blaming each other.  “The status quo is not going to continue……it can’t.”

During the hearings, probably the most troubling statement came from the representative from Novo Nordisc who stated that the ‘formularies’ in place were the way for each insulin company to reach the masses, we cannot put that in jeopardy.

I guess from a business standpoint, sure, but what about the patient?…….they live in jeopardy constantly.

Congressman Tonka from New York asked a series of questions to be answered yes or no.
“Are you all aware of the stories of those rationing their insulin?”
All six—-“Yes”.
“Have any of you had to ration insulin?”
All six—-“No.”
“Have you ever had to choose between buying food for your family or buying life saving medication?”
All six—-“No, and no one should.”

The reasoning given by all six on what could and could not be done to alleviate this problem, or the lack of an answer therein, was nauseating time and time again.  Leaning on the way ‘things have been done’ as the reason for not doing anything to change the problem today was frightening at best.

And after almost three hours, the hearing came to an end.  I’ll wait until next week and I will reach out to Congresswoman Degette’s office and ask her the exact question that anyone who watched today’s hearings would find themselves asking…………………What in heaven’s name is the next step?

Our Congressional Leaders have been incredible thus far.  Let’s hope it’s the start of the change. As one person noted, this mess has indeed created the one thing Washington has been seeking for over two years……. a nonpartisan discussion.  That’s just fine, but did it have to be at the cost of members from our diabetes community and their very lives?

More will follow…………………bet on it!
I’m a DiabetesDad
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Insulin Costs…..Today May have been the Day the Tides Turned…….Time Will Surely Tell

If you have any feeling whatsoever about the ongoing problem of the cost of Insulin, you must find a few hours to sit and watch Priced Out of a Life Saving Drug: the Human Impact of Rising Insulin Costs which was a Subcommittee on Oversight and Investigation of the Energy & Commerce Committee held on Tuesday, April 2nd.

It was riveting, engaging, informative, and I was left in tears, literally tears, at the brilliance and well-spoken representatives speaking on behalf of our diabetes community.  I honestly do not have the names of all of them but the ones who spoke the most; Dr. Cefalu from the American Diabetes Association, Dr. Kowalski from the JDRF, Christel Marchano-Aprigliano from DPAC; and there were others, Doctors, Patients, and people who understand living with diabetes in a world of increasing costs of Insulin; were nothing short of a very loud unified voice of reason mixed with a huge dose of reality.

Virtually every member of Congress attending this meeting came with the statistics about their home area.  They were ready to state the problems of what they were hearing ‘back home’ but as one watched the hearings continue something happened.  Something rare and extremely wonderful happened.  Very early on in the proceedings, The Committee was not so interested in stating what little they knew about diabetes in their own state anymore, they stopped; they listened.  They had willingly become the students.  And our diabetes teachers were nothing short of brilliant in their lesson plan,  Because their teacher……..was life.

Because every one who was up there representing…..well……us, who have or have a loved one with diabetes, via statistics, facts, personal stories, and representing thousands of other voices, rang true in the ears of our congressional leaders…….there is a problem, a big problem.  Hear us.

And I do believe Congress did.

Looking for transparency to understand where in the financing-chain is the mechanism to make sure that these ‘savings’ will get to the patient is just a step in the direction needed to be taken.  It’s not a single entity’s fault nor is there a simple solution.  Individual after individual pounded away as a boxer does with their opponent on the ropes, emphasizing that congress needs to be involved to change these parameters, that people are dying because they cannot afford insulin, or that they are dying while rationing insulin use.  Our speakers came with facts, figures, studies, and real life stories of what we all know already.

Each and every testimony from the invited panel painted a vivid picture for our congressional leaders to understand.  The Members of Congress were left with their mouths open, their minds open, and they, in turn, emphatically thanked each invited guest from our diabetes community.  They were not there from just the JDRF or the ADA or the Patient Advocacy Coalition; as I have never heard them before–they were there on Capitol Hill for you, for me, for us.

Bravo all…..and thank you.

Next week, this same committee has summoned the 3 main insulin manufacturers and the 3 PBMs (Plans Benefit Mangers) making up 80% of the proceeds to come to Capitol Hill and explain their point of view.

April 2nd 2019 may very well be the date to remember when the problem of the cost of insulin made it to Capitol Hill and Congress listened, and Congress acted.  Time will surely tell but holy wow, was I so proud of those who went up the Hill with one loud, unison voice of change.  Bravo to all of you and humbly, we thank each of you.

Anxiously we will await next week’s hearings.

I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Remember there is a “Best” in Banting and Best

November 14th, is World Diabetes Day.  This date was chosen because it’s the birthday of Frederick Banting.  Who chose this?

I’m a huge fan of Hamilton, the Broadway Musical.  In as great as the show is, I always found it interesting that Alexander Hamilton, a man who was not even president, became as popular as he did, and stayed.  Was the biggest claim to fame the fact that he was shot, and died, in a duel?   In the show, the opening number in fact, Aaron Burr announces,…..and me? I’m the damn fool who shot him.  We are lead to believe in the musical that Aaron Burr was much more popular than Hamilton and his life’s love declares that she would spend the rest of her life making sure history remembered Alexander Hamilton.

I guess it worked.  I mean I do not see Aaron Burr’s portrait on any currency.

Which brings me back to my opening sentence.  Who decided that Frederick Banting gains all the attention when poor Charles Best, lacking the PR machine that Alexander Hamilton had, becomes not much more than a foot note in this historic discovery.

Now I’m very aware that it was Banting who spearheaded this endeavor but it just seems to me that there was much work that went into the discovery of insulin.  I mean both of their names are on the patent (there is a third name as well—a different story for another time).  Banting even shared half of his money from winning the Nobel Prize.  Good. But not good enough.

The world will never fully understand the work of Charles Best in the discovery of something that literally has saved the lives of millions of people.

Insulin.

So this February 27th, the birth date of Charles Best, I say we do something in honor of the man most forgotten in a discovery that had glory enough for all.  Perhaps pass legislation on this date that makes the very discovery created to save lives, also affordable to save lives.

I am a diabetes dad.
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Could it be; a Patch that REALLY STAYS? Take a Look and Try for Yourself.

As many of my readers know, I do not use these pages for advertising.  If I find something that can help, solve a problem, and/or make diabetes life any easier, I share. To be clear: I have received no remuneration for this article, I’m sharing about this product because, quite frankly, it just does what it’s supposed to…….stay on.

I hope it works for all, but in fairness I have not seen it on everyone so I can not say 1000% that it will be for everyone.  And of course if you have any hesitation, ask your medical team about the product after you visit their site and find out more.  That said, and the disclaimers aside, if you ever had a problem with your patch you may want to read carefully.

StayPut Medical is a series of patches created by Mike Mangus (founder Pres./CEO) because he heard from so many while in his prior jobs what a problem these patches are/were with the medical devices supposed to stay on, including those devices worn by people with diabetes.  I saw a group of moms talking about StayPut and then I gave a few to people I know; and each one said the patch made an incredible difference.

So now I share with you.

You can click the link above on Mike’s site where you will find a boatload of information,  how this all came about, and also how you can receive a free sample ($1.99 for shipping and stuff).

Good luck and let me know what you feel after you try them.  And also share this on sites where this patch might help others.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

A Favor……Perhaps……..Could be Times 4!

As many of you know, I rarely utilize this column for anything more than the articles to hopefully teach and inspire,  But there is this incredible opportunity given to the Diabetes Research Institute Foundation that I’m sure hoping you will join in and help.

The Sola Sweet company, from now until the end of November –Diabetes Awareness Month—-will match every dollar up to $10,000 donated on the site listed below—-we already have over $1600.00.  And to make it even better; we also have another match from a Foundation that will match that $20,000 donation as well.   It’s too good an opportunity not to ask if you would be so kind and help.

Go to this site on FaceBook:
https://www.facebook.com/thesolacompany/
……and donate today.  November is Diabetes Awareness Month, Tomorrow is Giving Tuesday, with everything your $20 donation would be matched to make it $40, and that entire match would be matched again to make it $80.00…..so EVERY donation will be multiplied by 4……please donate today.

Any questions, feel free to shoot me an email at tkarlya@drif.org

Thank you so much for caring so.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

They Lost their Sons to T1D…….What they are Doing Tomorrow Will Drop You to Your Knees.

Michelle Bob JenHave you ever stopped and actually tried to figure out how we do exactly what we do every day when dealing with our child’s diabetes?  I mean, imagine yourself before diagnosis; did you ever think you would be doing what you are doing today?  When the doctor ran down the list of all diabetes management would entail, did you shake your head and say, “OK, no problem”?

I doubt it.

But here you are.  Even if your child was diagnosed fairly recently, look where you are now compared to that day.  It’s not bad to take a look behind yourself every now and again and see the trail you blazed.  As the commercial used to state; “You’ve come a long way baby.”   But as my dear departed friend Larry, a minister, used to say when you reminded him how far you had come, “OOOOOOO YES BABY, and you have so much further to go.”

The road is long.

But here is a thought, no one escapes life and what it throws at you.  Precious few escape the so many disease states and tragedies that can change a life forever.  Some get more than others and sometimes it all comes crashing down, doesn’t it?  Remember, it happens to everyone.

As I reflected on yesterday being such a tragedy I thought of friends like Michael Otten.  Michael is about as much a definition of a guys’-guy as Webster could ever define.  Michael’s story of 9/11 would drive any person to their very knees, and he can share that with you some day, if he chooses.  Trust me when I tell you two things; he lost precious family members that day and he was one elevator ride away from being included in that horrible count of fatalities.  Just one incredible story.

Michael also has a son with T1D.  Seems like just yesterday that he was diagnosed.  He also owns his own business.  He has no time whatsoever…..none.  Yet he finds time to give back what is important to his family.  He will always greet you with a smile, a firm handshake, and want to know how YOU are doing.  Stories, oh he has stories, but he would rather talk about his family, sports, and know about you.  He is a brother-in-arms in this race for a cure.

A lesson I learned a long time ago that Michael personifies, the people who are hurting cope with things because they are more concerned with others and the world around them than wallowing in a world where their own problems rule their life.

I have said it before……they learn…….to cope.

Everybody has hurts and pains that drive right through the soul; it’s not what comes along—-it’s what you do with it.  Get on, get off, get run over.  The choice is clearly our own.  What will you do with it.

One final thought; The families of Michelle Alswager and Jen & Bob Nicholson lost their sons to T1D.  Lost!  Yet tomorrow they are running in an Iron Man’s grueling race to help other with diabetes……..think about that……..it will benefit them, NOT ONE IOTA in their dealing with diabetes…..but it will help your child and others who know the work of Sean and Mollie Busby’s Riding on Insulin.

So think about them tomorrow as they take part in something they have been training for months to achieve; and it still will challenge their physical bodies like nothing they have ever done before.  And for what will they benefit?  The satisfaction of helping children of yours and mine.  Pretty bold.  Humbling.  Yes?
(and if you have a buck or two, sponsor a mile…….it’s not too late; just click
Riding On Insulin.—I promise you will feel good about it.)

So the choice is yours.  Again, something coming into your life? No Control.  What you do with it when it arrives? All control.  Easy????? Absolutely not.  They will be extremely emotional at the race……but they will do it….they know their making a difference.  They know their sons would want them do be doing it.

Still.

It humbles us none-the-less and makes us ask, “what will we do today to make it count?”  What will you do today?

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

There is Just Something About the Number 11…….Sigh…..I Was There.

world trade centerEvery time I see an ’11’ I cannot help but think of the two towers in lower Manhattan.  When it has a ‘September’ before it, it brings me back to a time of not only incredible pain but also incredible human spirit.  That day, was today.

I was there.

I have often said that I saw things one could not have nightmares about.  But I also state for the 36 straight hours I was down there, I witnessed a magnificent human spirit.  People did things to help that you could never imagine.  People came together from all walks of life for one reason, to help.

No religion.  No color.  No anything but incredible compassion.  Incredible caring.  And the unyielding energy to get the job done.  It was a sorrowful and hateful day; but it also showed us at our best.  I will never get over what I saw, I like the word cope….I learned to cope with what I saw.

Cuts, blood, death, bodies dropping from the sky almost like raindrops……one learns to cope.  We push it to a place where we can cope with it……it allows us to move on.  So on this day, remember what happened?  Sure.  We will all know where we were at that time, that exact moment the towers were hit.  But also remember through the pain, death, and sorrow……..we moved on.

Moving on is a good thing.  We have done that…….but as I look around at the world which surrounds us, it would sure be great to see much more of that human spirit, that human resolve, once again.  It served us well fourteen years ago and it would surely serve us well today.  Maybe if we all look for it a bit in our hearts, it will take over once again.  I surely hope so.  If you need a reminder, think of it every time you see an ’11’.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

OMG!!!! What Did I Do To My Child??? What a Horrible Parent!!!!

puppyIf you work with your hands long enough, you become calloused.  If you have 3 kids, chances are when the first one dropped their binky, pacify, woot-woot from their mouth and it hit the floor; you cleaned it, sterilized it, got it cool again and gave it back to your child—when the third child dropped it, you wiped it on your pants and stuck it back in.

Experience.

There is much to be said for it.  The calloused hands are because I beat myself up so many times, I graduated to just making a mental note not to ‘do it’ again, whatever it is I did wrong.  The simple truth is, when it comes to our diabetes world, we will make mistakes.  And some doozies as well.

When I have lectured, I have stated that no one has made more mistakes at this diabetes thing than I.  It’s not rhetoric, I firmly believe that; so today I speak to you as the king of what the heck did I just do, moments.

Wrong doses, forgetting doses, not figuring…(whatever) would have an impact, not waking up, not going to sleep and on and on and on and on……you will make a mistake, probably many.  There is room for error in this diabetes world and do not be so quick to beat yourself up over it.  Take that energy and learn from it.  Go over the episode in your head step-by-step and make sure you know WHAT YOU WOULD DO differently.

Unfortunately for the time being, I can assure you that when you wake up, diabetes will be there again giving you another try to get it right…….or as it was in my case many times….screw it up again.

So relax.  And take it a little easy on…….well…….you!

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

We ‘Need’……REALLY????…….uhm……Come Back from Over the Rainbow

ozI have heard this statement a million times.  “We need…..”  In reference to the diabetes community; we need a really good spokesperson; we need an ice bucket-type challenge, and other things…we need…we need….we need……….uhm……..not really.

We need to pull the weight ourselves……..all of us.

Mary Tyler Moore has given tirelessly of her entire career to the message of diabetes through the JDRF.  We can argue the fact that she is probably in ‘the top 3 category’ women EVER to be on television.  She did countless public service announcements which aired, she did countless trips to JDRF functions and private meetings (I was even privileged to be with her on one of them), she did a countless amount of trips to talk to elected officials…..never has there been a better public figure than Mary Tyler Moore in ‘speaking diabetes’.  The JDRF, NO—we; in the DOC—are lucky to have had her and her messages for so long.  Someone so tireless, and yet, the message still needs to be heard.  Did the world ‘get it’?   So is the answer ‘just’ a great spokesperson?

The JDRF and ADA walks and rides are the best in the world.  THE BEST.  They get countless amounts of people and raise millions—-MILLIONS of dollars.  Ever go to an event that has a fund-a-grant—well you can thank a woman in Seattle named Deniz (JDRF long-time employee) and the Benaroya Family of Seattle for starting that stroke of genius a million years ago.  So is the answer ‘just’ doing a NEW event?

Years ago you never even heard of the JDF (JDRF)…and the ADA was mostly a group of physicians and you might have heard of walk in October.  To be honest, even in my professional life at the DRIF, I am glad that these organizations are what they are with the people behind them because I was here in 1992……..and let me tell you something….at THAT time there REALLY was no understanding about diabetes.  These two organizations set the bar and opened the door for many smaller organizations and educational opportunities………and off we went.

A difference between T1 and T2???????…….back when??????……seriously?????……people never even heard of the disease much less discussions about better understanding.

Are we done yet.  ABSOLUTELY NOT!

But before we are so quick to say that nothing has been done…….let me assure you with almost 23 years at this at full speed I agree with what Dorothy said in the Wizard of Oz; “……. if I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with! …”

Many organizations have been created over the years with GREAT focus and if ever there is not a perfect synergy between you and a group……find another; they’re out there.  It’s easy to just say, “we need….” and be done with it.   I’m here to tell you that “we need” is alive and well and more than that ‘we need’ is here now.  Add to all of this the DOC, we have one helluva powerhouse.

If you are not plugged-in somewhere—get plugged-in somewhere.  Yes we always need new spokespeople and new ideas, but let’s not forget what is here right now.  Be the addition to what is here now before re-inventing the wheel–change them up to make them better, and add as needed. There is still nothing so exciting as seeing 8,000 people the morning of an event.  I know, I see it every year at one of our walk-event with Walgreens and the DRI at Miami Marlins Stadium.  If you are active in these type of events with JDRF and ADA—you see it too.  It is shown ALL OVER the world…..Is there ANYTHING like it…….really?

They say there are almost 30 million people out there with diabetes (T1 and T2) and add the multiple of 3 other family members and the number comes to 120 million people have, or have a direct connection, to diabetes.  And if you are interested in just T1D, that same number is about 8 million with/with-direct-connections…….are there 8 million people in the epicenter of events around the country?  Not even close.

Without going into detail, in my immediate family we are directly impacted (or have been) by MS, Cystic Fibrosis, Alzheimer’s, and Autism–the organizations surrounding these events have shared (in part) over the years of the huge success in the diabetes world.  They see it more than we do.  They cannot even fathom having two humongous organizations like the JDRF and the ADA  both surviving and flourishing side-by-side; not even to mention major research centers like Barbara Davis, Joslin, and the DRI all also being in the mix.  Now add CWD, Camps, DECA, The Diabetes Scholars Foundation, and many, many more with specific and different missions.  We need…………what…….I ask?

So what am I saying?  As Dorothy stated, we have in our backyard EVERYTHING we need to succeed, and or be heard.  I think we need to figure out how to get those who ‘do nothing’ involved…..either that or just understand WHAT we do have.

More to do?????  Absolutely.

But “we need…..” must be replaced with; ‘put me to work…..’ because heaven knows we have what is needed……..every entity mentioned just needs more workers/volunteers/donors……there is nothing too small; and they will all welcome any and all help you can give.  I have said it forever, “Don’t Do Nothing”………………and don’t.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.