Small Time Becoming BIG TIME…..Diabetes Community’s Perfect Song

There was a movie with Tom Hanks making the rounds a years ago entitled,
That Thing You Do.  Wikipedia describes the movie; A small-time rock band rides a big wave of success with the help of a savvy record-executive and a catchy single.

You? You’re the small time rock band.  The savvy record executive are the voices who started this outcry.  And the catchy single is the unfairness of insulin prices.

The movie is about this small town group, with just a small voice keeps pushing and riding and yelling from the mountain tops that they have a good song.  Finally, a company called PlayTone (starting out as fictitious record company for the movie and actually established in 1998 by Mr. Hank and friends) signs them and pushes them to the top.  Had the voices not been there early on, the success would not have occurred.

Now read this first line from a Reuters article two days ago, and read it carefully.
Powerful committees in the U.S. Congress held hearings on Tuesday on insulin affordability and high prescription drug prices, an issue both chambers have said is a top priority for the year.

You did that.   Yes, you!

Before all of the many large organized diabetes groups jumped on board; and just as in the movie, you need big time to take you to the big time and they are a welcome site, there was just you.  You who have diabetes or have a child with diabetes first said, This is unfair, the current costs are going to be hurtful.   You wrote letters, you protested (even by yourself), you posted on social media…..you…..the voices in the diabetes community….before anything that occurred, became organized, or became unified……it was just you….that one voice who cared enough to “just not do nothing”.

So there is surely much work to happen yet.  But before all the big guns jump out and send press releases telling you of their wonderful efforts…….and they surely were and are wonderful efforts……..I just want to add a word of thanks to all those who one will not read bout, see, or hear about.   But know this, with no uncertainty, without those voices to tell the stories of rationing, cutting insulin doses, and simply doing without when no one else thought it cool enough or news worthy enough; we would not be here today.

Like I said…….more to do…….but thank you diabetes community, your voices are about to turn into a roar.  A number one hit no matter how you look at it.

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

Machines Break…..Be Careful of the Image Your Child Sees

As many people know, I am fairly active with hurricane relief efforts.  I was once patched in to someone overseas via a satellite telephone.  The young man was in dire need because his insulin pump broke while he was moving out of his home to avoid the rushing waters.  He worked for a company here in the USA and they reached out while they were on the phone with him.

I asked them to translate and see if the man had insulin and syringes.  When they told me indeed he had them, I asked why doesn’t he just give himself a shot.  They translated and stated that he would do just that.  I can not emphasize how true that story is and it scared me to no end while it was happening.  It’s my hope that it was just so much happening so fast that the thought just did not enter his mind but he did not know that an injection could work. But if it was the fact that he was not ready to use something else……that’s a problem…..and it could have been the cause of serious consequences.

I also read many times on-line how lost people become because “a disaster” happens and their management tools become unusable.   Many have stated they would not even try certain diabetes management products because they are so afraid of what could happen.   Let’s look at both sides of this discussion.

In 2017, the most recent data from the National Highway Traffic Safety Administration (NHTSA), over 37,000 people were killed in car accidents.  Does that mean we would not drive in a car again?  Maybe, to some.  But for the most part we get in and out of our car countless times a year not thinking once that here would be an accident or a mechanical failure in the car, do we?

Insulin pumps and CGMs are machinery.  But as so many say regarding their diabetes devices, “when they work, nothing is better”.  Just as in how lost we would be without cars, it is certainly better when they work.  Not unlike diabetes management tools. But also know this; I would be hard-pressed to name any machinery that will not, at some time or another, fail.  That statement is not to scare you—-it  is to make sure you’re ready.

Ask yourself, what is my back up plan?  What will happen when the insulin pump malfunctions?  Has your child even used an insulin pen before?  Have they even seen one?  Do not wait until it is time to use something for the first time that your child is being introduced for the first time.  I’m of the belief that back-up devices should be introduced, and even used, prior to that pump or cgm breaking….know this….they will break.

And the most important thing to remember when a device breaks is that your child will closely mirror you.  If you are not running all around in a crazy panic, chances are your child will not either.  How many times do the local fire departments share that you should be prepared when a fire hits your home?

When something went wrong with our kids’ diabetes devices (and I so strongly credit Jill, my wife, for this) the plan was rehearsed and ready.  Back up plans even had back up plans.  The kids were not panicked or freaked out because something different had to be utilized.  Three different roads can get you home, your only lost if you have not tried them

Take the time to work through scenarios of what to do before they happen with all those who care for your child with diabetes.  That way when they things are ‘flipped apple-carted” your response and actions will be second nature.  Things break, they do, keep the catastrophe level by being ready.  Keep your children calm by staying calm.  Be calm by being prepared.

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

 

Legislation on New Bill to Tax Air we Breathe

In a very discreet and without fanfare congressional move, both houses today passed legislation that states commencing on January 1, 2020 there will be a tax placed on each American citizen for the use of air which is part of the mainland United States.  Senator John Consigliere of Wyoming stated that the move was made to further be able to pay for the many means of purification now needed for breathable air……………….

…….okay……got your attention??????

Stupid isn’t it that something so needed would have any cost to use it?  Something we would die without.  So needed for us to live that it does not make any sense to think we would have to pay for something we have to use to stay alive.  There will be no tax, there is no such Senator from Wyoming.

BUT for goodness sake can someone, anyone, possibly explain to me that people who need insulin to live; in some cases cannot get it due to cost.  If you think about it, there are many, many medications you can take to make your life bearable and better.  Some could die, if the med was not  taken.  But every single person—–EVERY SINGLE ONE of those who live with type 1 diabetes would die if their insulin was not available.  Some sooner than others.  And here’s the story, some have died already.

One was too many–and why?
Because of GREED!!!!!!!!

What does the government need to see to step in here.  Until a solution is reached, let’s call on the government to relax any and all legislation that prevents people from using whatever means necessary to obtain affordable insulin.  If an executive action can get a wall built (well, ok, threaten to anyway)….cannot the same action open the boarders, ease the restrictions, open the floodgates to allow insulin to be purchased at an affordable price?????

Once we figure it all out, we can backtrack a little but until such time, an emergency act can save lives and surely……it will!

Send this everywhere you can.  Until such time that we have an answer, this is an emergency action, an executive action. to save lives.

This is not a favor to make life comfortable.  This is an act of government/congress/senate/executive to allow insulin to be purchased……..at the end of the day, to so many, it’s as important as air.

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

 

 

Cheerleading for Diabetes Awareness, with a Heart Bigger than Texas

It was exciting to learn that this year the NFL’s program My Cause, My Cleats would include the Diabetes Research Institute as Raven’s Tight End, Maxx Williams, would wear custom-made cleats recognizing the work of the DRI scientists.  This program allows NFL players to wear custom cleats in December.  In fact, many, many players take part and usually auction off the cleats to raise money for the charities they represent.  Quite a few diabetes organizations were represented in the NFL this year (Branden Jackson/ADA; Jarvis Jenkins/JDRF to name just two) and social media got into sharing so many of their stories.

As is the nature of social media, one never knows where a simple post will continue.  One story, and a video in particular, really caught on.  Interestingly enough, it was not a story about a football player, it was about a professional cheerleader.   As the
My Cause, My Cleats was being unleashed, The Dallas Cowboys Cheerleaders (DCC) were releasing an effort of their own called My Cause, My Boots.

And how social media responded. And how the diabetes community cheered the loudest.

As any football fan will tell you, ‘dem boots worn by the Cowboys Cheerleaders’ are as much known as the Dallas Star that is worn on the team’s helmet.  Run a little differently, DCC’s My Cause, My Boots is more about the cause than a particular organization and I was given the incredible opportunity to interview a member of the DCC who, as it would turn out, has a very special reason to discuss diabetes, and to take it from the sidelines to center stage.

Tess, thank you for taking the time to discuss your choice to use the DCC platform to bring awareness to type 1 diabetes.  How long have you been a DCC?
Tess: I have been a Dallas Cowboys Cheerleader for the past 3 years.

As I prepared for this interview, I learned that Tess was actually a dancer through all of her life and to me, what being a Radio City Rockette is to those who dance, a Dallas Cowboy Cheerleader is to those who have ever cheered.  It’s the icon for perfection in the industry.

Did all of the history play into your mind as you worked to become a DCC, how so?
Tess: I never actually cheered BEFORE cheering for the Dallas Cowboys.  I was on dance teams, but not cheerleading.  I danced all through college at LSU and in fact my first Dancing was at a LSU football game which was in the Dallas Stadium, coincidentally.

Yes it did play into my mind. You’re in the stadium.    But it was more exciting than it was intimidating. When I ‘did get the call’ (to be a DCC) being back in the same place it all started, and in this new and different role, was certainly a moving experience.

It’s no secret there is just so much outreach in communities all across the country with NFL Programs.  One, in particular is My Cause, My Cleats where players wear cleats adorned with their favorite charity in a special design. DCC came up with My Cause, My Boots?  Of course My Cause, My Cleats is a close relative to My Cause, My Boots…..can you share how the idea came about for the boots?
Tess: My Cause, My Boots came about, and as far as I know we are the first team which started last year with the boots.  It was just an idea.  We started by trading out one pink ‘star’ for one blue star on our vest and we had a pink star on our boot; and our directors thought it would be an incredible idea for us to choose our own causes.  And they worked with Lucchese Bootmaker, the official bootmaker for the Cheerleading Team, on what we could do with our boots for a cause close to each of us.  We had a pink star that first year and in the second year the thought was how to expand that original idea, and what else could we do with the star.  So, we gave them our cause and Lucchese Bootmaker was very creative in utilizing just that one star to not include various charities but also to be individualized to represent so many charities with so many different and unique designs.  They did all sorts of different ideas. I chose diabetes and sent them the ribbon with the blue and gray colors with the blood drop seen in so many places and that is all I did.  Their hugely creative team came back with the little red heart in the corner of the star.  Simple, direct, and powerful. So yes, we were the first team I believe to do something like this, we can only hope it spreads and more cheerleaders get involved.

Tom: When I first saw it, I actually sighed because it was very clear what it represented.  The phrase ‘Deep in the heart of Texas’ took on a whole new meaning.
Tess: Oh good, I am glad it was clear.

You did this for Troy, your boyfriend.  Could you share those series of events?
Tess: Troy and I met in December 2016 and he was diagnosed in September of the same year.  I was not there; the hardest and worst time at diagnosis…but since we met I have gone through this progression of being by his side.  I’m a big animal lover and last year I chose Animal Rescue as my charity as I have a cat I rescued.  This year, many of the team members chose to honor people they knew living with different diseases and I thought it would be a nice honor, a nice gesture, for Troy if I chose diabetes.  I thought it would be a nice surprise for Troy.  Again, I had no idea what the design would look like.  I never mentioned it, I never spoke to Troy about it.  He never knew about it until the boots were made.

Could you share a little of his reaction.
Tess: We all picked the causes in September, and did not know what the final result would be.  About a week before we received the boots, I shared with him, ‘Remember last year when I picked purple for Animal Rescue for my boots as a cause, this year I wanted you to know that I chose type 1 diabetes for you’.
It was a very special moment and we both became pretty emotional.  He was shocked, he couldn’t believe it.  They surprised us when the boot came and I rushed home and opened the box and it means a lot to me that you said you knew right away what it meant.  It was a very special moment when I saw the boots for the first time.  He was very excited, took pictures and sent them to his family.  It truly was just very special.  What I liked about it was that it was more about awareness of the disease as oppose to linking to a specific organization.  It was about honoring someone you know, someone who has the disease, and supporting THEM; and that was an incredible feeling.

So now, it’s out there.  The My Cause, My Cleats is out there and so is My Cause, My Boots.  You make your awareness video and the social media explodes.   What started as a simple gesture…..‘bam’ it goes everywhere…..what was that like?
Tess—I quickly realized, as I expected it to be, that it was going to be more than just a simple gesture.  Taking advantage of the platform I know that I have, that we all had being part of the DCC, and being able to reach more people and especially just to be a light to this whole community was overwhelming.  Last year the idea of My Cause, My Boots was new.  This year we had more media and people were expecting it.  My cause was highlighted by an accompanying video.  People were already sharing stories and reaching out to me saying they saw that I chose type 1 diabetes even before the boot, as a finished product, was being shown.  So, I knew from the get-go that this was going to be so much more than just me wearing a different color, or something different, on my boot.  I knew that it was going to reach a lot of people because this community is just so strong.  And because they lean so much on each other for support.  I have seen this before, I have seen this with Troy.  It’s a big thing to know others are out there and to also know you are not going through this alone.

I saw your video as you spoke about Troy and what he goes through with his t1d.  Being a father to two children with this disease, it was very moving.  Could you expand a little bit on what you see him go through, he’s an athlete……right?
Tess: Yes.  He plays baseball and played at LSU.  And played before he was diagnosed.  He was always an athlete and he was playing and also having type 1 diabetes before anyone caught it.  Maybe they thought he was too old so no one checked, no one is sure why, for whatever reason; he went on struggling with it without him knowing and without others knowing what it was.  He went to many doctors.  It took one really bad episode where his blood sugar topped out over 800 for everyone to realize what was going on.  He was 22 when he was diagnosed.  He quickly handled it.  He got this (his management) to where he could play.  Late diagnosis, but early enough.  And he played then, and he is playing still.

 

Tom–After him sharing all of that with you, what would you say to someone who was newly diagnosed?
Tess: I’m surely no expert at this but as I prepared to make the video, and learned what I needed and saw the video that I made had over 70,000 views, it just highlighted to me how much more I need to know and educate myself so I can figure out how to educate others.  As I learned from Troy, and I know you know Tom, I know it’s not my disease.  I can only do so much.  It’s Troy’s disease.  I can do just so much but what I can do is be there, offer words of encouragement.  I’ve seen him struggle with it but I also have seen him come out the other side and truly follow his dreams.  He keeps going.  We all see others succeed, even doing so with what burdens they have to bear having this disease.  Those stories uplift him.  He’s now one who can inspire others. He is the perfect example that you can keep going, it does not matter….you can do whatever you want.   He says, “The less you control it, the harder it is to control”.

My saying is that you must control it, or it will surely control you.
Tess—That’s a good one too, I have to share that with him.
(I laugh) Yeah but I have 26+ years at this…..he surely learned much faster than I did as a parent.  I’ve had a few more years at it for sure.

Now that you have started this, do you see yourself continuing advocating, helping, etc.?
Tess: Short answer, yes.  But I have so much more to know.  When I started this, I knew I had to become educated and I know I have to do more to understand what this disease is about.  I knew of this disease.  I knew there was a difference between type 1 and type 2.  But living beside someone who lives with it 24 hours a day is different.  I gained a new appreciation.  To know…..just……just how near death Troy must have been, was terrifying.  That’s something that was new to me.  Something that I did not know was going on.  I think that in itself is enough to bring awareness and I hope to raise resources to share that story because it’s incredibly powerful.  Maybe it can prevent someone from going through what he went through.  Maybe if they hear the story, they will see and know the symptoms whether it was a child, or an adult.  Even if someone says, “I heard something like this and do you think it might be diabetes”?  Even that would be an incredible start.   To educate.  I mean I have seen already, hearing ‘My child, my dad, my whomever…….’ is just so amazing to create a connection.  So yes, I will continue on this path and I know it’s a dream of Troy’s because he knows how important it was that people helped him.

Your video was spot on and resonated with many people.
Tess: I tried to stay focused on the person I knew and not try so hard to explain every aspect of the disease…it’s complicated and it means a lot to hear that we were close to the mark.

As I said—spot on the mark, if you ask me.
Tess:  Thank you that is good to hear.

As my readers know, I like to end my interviews by giving a word or short statement, and ask you to share the first thing that pops into your head, either one word or short phrase. Is that okay?
Tess: Sure

Diabetes?
Tess: Troy

Dance?
Tess: Love

Dallas, the City.
Tess: That wonderful skyline

Dallas, the Team?
Tess: Represented by Cowboy Hats.

Troy?
Tess: Strength

A newly diagnosed child?
Tess: Fear.

Thank you

Tess: Thank you for setting this up.  This is the reason for My Boots, My Cause and I hope this can continue and I appreciate the opportunity.

It’s very clear that this incredible couple will be heard from again, and again, and again in the future on this new journey.  A journey for diabetes awareness.  They will save lives as they continue to use their respective platforms to educate those who might not even know what diabetes is, what diabetes looks like, or even what the warning signs might be.

Saving a life, methinks, would be better than even winning a Superbowl.

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

 

2018, The Year People Died Because of PURE Greed.

There was a chill in the air as 2018 nervously tapped one leg than the other.  Every other year had to wait outside and 2018 was sure it was planned to be made to wait until the Boss came in.

The Boss came in out of breath and stood behind the desk, red-faced and staring at 2018.  Both did not speak at all for what seemed like an eternity.

Really?  Really 2018?  Each and every year I had to let your predecessors go because they did not fulfill the goal of finding a cure.  It’s a mandate of every year to take us closer…….to find a cure.  But you, 2018, you did the complete opposite.

2018 started to speak; I……I……I’m not sure……

The Boss broke in; Hush up.  I’m furious, 2018.  Livid.  Angry. Disappointed.  And I won’t even get to the subject of a cure.  Not at all 2018.  I have one word that continues to infuriate me.  One word.  (screaming now) Do you know that one word, 2018…..do you know the word?

2018 stared down at the ground and the tears uncontrolled spilled out of each eye and fell to the carpet below.

Yes, I think so.

The boss leaned forward on the desk and burned a hole into 2018 with a stare both steaming hot and frigid cold at the same time.

Insulin, 2018…..the word is Insulin!  Every year before you 2018, made an argument to be kept even though a cure was not found and quite frankly, I owed it to them to consider—-to almost allow them to continue based upon some of their INCREDIBLE advancements,  but not you 2018.   CERTAINLY NOT YOU!  How could something so crucial be kept out of the hands of those in need based solely upon cost?  REALLY 2018……it’s money?  Greed?  Pure Greed?  And it does not lay at the feet of the Insulin Companies, that is too easy an answer, and it is not an accurate one either.  There needs to be open disclosure…..the Insurance companies, the retailers, and most of all; the PBMs (Plans Benefit Managers).  Buybacks, rebates, and everything else that adds to the burden of the patient.  I’M SICK OF IT 2018! DO YOU HEAR ME?

The Boss stopped.  Just stared at 2018 who had nothing to say.   No defense.  No words, No retort. No possibilities.  Just……..nothing.

The Boss spoke almost in a whisper.  People died this year 2018 because of utter and stupid greed. People were forced to ration their insulin, and some plainly had to go without.  Shame enough for all.  Everybody pointing fingers at someone else.  “Not my fault” said by almost everyone.  And yet a son, a daughter, a mom, a dad, a relative, a person who was loved was buried, 2018, because they could not afford the one thing to keep them alive………………………………(The Boss yelled)  Insulin, 2018, INSULIN!!!!!!!!!

The silence was deafening.

The Boss with face covered and a whisper of a voice.:
Just get out 2018.  The cure wished for was actually overshadowed by people who cannot afford their insulin.  They died, 2018, they died.  Just get out, you were the biggest failure I’ve ever encountered in all my years.

There was nothing more to say.  2018 got up and walked out never even turning around or uttering another word.  As 2018 opened the door, left, and got into the elevator; the Administrative Assistant hurried into the Boss’ office.  The Boss stared out the windows behind the huge oak desk.

Should I send in 2019, Boss?

The tears rolled down both cheeks of the Boss.
Give me a minute.  (Sigh) Hopefully 2019 will have the correct priorities and we can focus back on that cure.  Someone needs to make a difference.  Insulin must become affordable for all.  Let’s hope 2019 is the one to do so.

We can hope so Boss, we can surely hope so.

The Boss sighed.  Show in 2019.

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

An Annual Tradition……Twas the Night Before D-Christmas 2018

With special apologies to Clement Moore.   I present what has become an annual tradition……an updated, ‘Twas the Night Before D-Christmas for 2018

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; CGMs enough to fill a bin,
All so new and even under the skin,
Insulin is still with a cost way too high,
Government should act, stop asking why.

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

The voices were loud and the voices were clear,
We will shout as one, we all have no fear.
Insulin is not a luxury, stop causing such strife,
Insulin for all it is needed for life.

Many things were good, many things were fun,
Diabetes awareness campaigns are still being done.
The word is important for everyone to hear,
Capitol Hill is hearing our voices, we’re getting in gear.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

The life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they all get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

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

Dear 2018……..uhmmmmm…..’gotta minute?

dearsantaletter-outDear 2018,

Nice to meet you and we look forward to your arrival.
You may not know me fully but I’m pretty sure we both know of each other well enough from others, and I was told to contact you for the things that might be important during this upcoming year in my world; which is a world of diabetes.

I get it.  You’ll have people with long lists regarding the state of affairs here and abroad.  You will have people screaming on both sides of what is correct from their standpoint which they will insist is in the best interests of all…….sort of impossible, I know, but they will insist.

You will also have people asking for incredible mountainous requests for sick relatives and dire situations.  All-in-all, I do not envy you your situation.  Not only will you not make everyone happy, it’s my guess you will make only precious few as happy as they may want.  Powerful is the individual who recognizes that they cannot do anything about what enters their world but it’s what they do with what comes along that creates the path they walk.  We are each faced with that task.  Life is life; and no matter where we are in this world…..we are given life to deal with and manage.

With all of this in mind, it’s also my understanding that you take requests. It has been made clear to me, 2018, that you are not Santa Claus but that request can be made and you will sort through and figure out what is best and that asking is completely encouraged.

Okay…….so here we go.  This is my request for our diabetes world.  Others may chime in as needed.

First and always, I want a cure.  I’ve been asking this for some time and although I have not been one of those who point and say they have been promising it within the next five years (who are those people anyway?), I think it’s time.  Or, at least, some REAL significant progress toward that end.  Some clinical (human) trials in kids…..something promising please.

We also need some stability in the insulin world when it comes to pricing.  Either allow some of the cases to come to trial that make/prove definitive and serious allegations to force lower costs, or have someone come up with a generic brand that will shake the foundations of those who think they control all costs—-the prices are too high, 2018, please look into this matter.

Please help us make a REAL dent in our journey to stop the missed diagnosis of T1D.  No one should die or be missed diagnosis that in turn causes major havoc in people’s lives.  IT’S JUST SO AVOIDABLE, 2018, it’s almost ridiculous.  Thank you for the continued efforts of so many—-it’s MAKING a difference but we need to really make this a national initiative.

Health care costs.  Okay here is the deal, us in the diabetes word ARE NOT THE ONLY ones asking about this 2018.  YOU HAVE GOT TO KNOW BY NOW how important this issue is for so many causes, so many people, and so many reasons?  A group of fat cats in our Nation’s Capitol can no longer be allowed to merely make changes without fully understanding of what the impact will be…..it’s a mess 2018, please both tend to, and fix, this situation.

Management tools.  2018, I am not just  referring to a device that reads blood sugar and dispenses insulin; I’m talking about all management tools.  There needs to be a healthy array of available equipment and not controlled by just one or two companies.  This just makes no sense.  Never before have people (patients, loved ones of patients) been so nervous that what is available today will not be available tomorrow.  Medicare and Medicaid need to cover what is needed and we all need to know that what is needed will always be available.  It’s just not fair.

2018, these are all practical and needed request and understood, they are all tall orders.  But I have faith in you and believe in you.  From the fiasco of diabetes issues 2017 left behind, my hope is that you are better, stronger, and more aware of how to navigate the waters-of-need for all those who do not want to just live with diabetes, but thrive with it.

Good luck 2018, we be in touch to see how you are doing.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Night Before D-Christmas—2017

Santa Claus magic dustWith special apologies to Clement Moore. I present what has become a DiabetesDad tradition……an updated, ‘Twas the Night Before D-Christmas for 2017

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; and things we did see,
Like MiniMed’s Hybrid they call the 670G;
Away to the D-Community to see who was a hero on fire,
It’s those who battle T1D who really inspire

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

It was tough this year as great ones left out the door,
Just some were Keith Campbell and Mary Tyler Moore.
Their voices were loud and their voices were clear,
They will surely be missed, wish they could stay near.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

Although some tough times happened and we were sad,
Animas closing, costs too high and true, we were mad.
But onward we go staying positive all the way,
There’s so much to do, and it all starts today.

Fighting for many and trying to be fair,
Coverage for one, coverage for all, even with Medicare.
Human trials, products, not just for our self,
Diabetes tattoos, even CGM for Elf on a Shelf.

Hurricanes were cruel where they would roam,
Far away sure, but also at home.
Many worked hard helping where they could,
So many doing and helping as they all should.

Many stepped up to help and grabbed at the ball,
Helping some was no good, it had to be all.
Helping others and giving so very deep,
Hours and days they all went and went without sleep.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

Life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Annual Tradition Continues—–Your Child and a Personal Santa Letter

santa-from-videoSANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday 7th Annual fundraiser benefits Diabetes Research Institute Foundation
NOTE: Your child does not have to have diabetes to receive a letter from Santa (cute video—click picture)

Yes, Virginia (and Emma, and Maria, and Max, and Willie…), there is a Santa Claus. To prove it, Ol’ 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 donation to the Diabetes Research Institute Foundation. This jolly holiday fundraiser is up and running and you can click this SANTA CLAUS to learn how to send a letter and make a donation. Your child receiving a personal letter from Santa is certain to light up faces brighter than the star on the tree. And of course if you do not know of anyone who would want a letter from Santa….you can make a donation to just help the DRI continue their collaborative efforts to end diabetes once and for all.

Click here to learn more about the Diabetes Research Institute Foundation.

The personalized letters, which can be requested by parents, grandparents, aunts, uncles or any other family member or friend, can include all sorts of information; like a reference to any toy, game, iPad or techno-gadget on the child’s wish list or even mention something about their pet. Santa can even encourage them and that he knows how well they have been trying to manage their diabetes as well. The fundraising campaign is open to all families everywhere, not just those affected by diabetes.

To get all of the 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 last seven years. 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, the more personal Santa’s letter will be,” she said. “…… it is my sincere hope that people will give what they can to help the Diabetes Research Institute find a cure.”

After the debut event, 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 an even greater response this year.

To send a child a letter from Santa Claus, JUST CLICK HERE or you can click the picture to see a really cute Santa Video about the personalized letters. The deadline for participation is midnight on December 11th in the USA and December 6th for any area outside the USA.

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

Why Live Life in Fear When You Can Live it to the Fullest

CWD Smile Face quitters winnersI heard this statement from a person at the Children with Diabetes Friends for Life Conference in Orlando Florida this week.
“I refuse to let diabetes dictate what I do”.
I like that saying and I like it a lot.  It sort of summed up what thousands of people heard this week at this, the 18th Friends for Life Conference, sponsored by the Children with Diabetes.

When we first became active in diabetes causes after Kaitlyn’s diagnosis, I became the Executive Director of the JDF (now JDRF) Long Island Chapter.  At that time we were one of the handful of chapters chosen nationally to serve as an experiment for a new idea called a walkathon (that for years, was really only run by the March of Dimes) to help increase visibility AND revenue.  The JDF was doing walks before, but they were about to catapult to a whole new level of success.

When I became the Executive Director, the chapter was reeling from the death of a young man named Angelo Centano.   Apparently Angelo had many complications but he also had this incredible spirit, an incredible sense of humor, an incredible disposition, and an uncanny way to get things done despite his many physical limitations.  One day I found a note in my desk and it had a quote on it from Angelo.  It was a simple note, but a powerful note nonetheless:
Quitters Never Win, Winners Never Quit.

I’ll never forgot it.

There are many people who lost their battle against diabetes, many.   You have read about them and so have I, knew quite a few also.  Every single person, no matter their age, that I know who we lost to diabetes was ALSO living life to their fullest when they were taken.  They were not comfortable to just live life in a bubble or on eggshells, THEY LIVED!   I have also felt that the people who choose to believe that they can do ANYTHING with this disease do so and pay homage at the same time, in a way, to those who are no longer with us.

No matter what life throws at us (and make no mistake, we all have something), we cannot avoid how it hits us but WE CERTAINLY can get out there and make sure that we are not stopped…..and we shouldn’t be stopped, ever.  The only thing surpassing all of the incredible knowledge given this week at CWD, all of the wonderfully talented people who did the teaching this week, and all of the great times; is THAT sense of empowerment that even with this disease…….limitation is truly ONLY limited by your imagination.  It’s given to everyone…………………….by everyone.

Today many people said goodbye when they left Coronado Springs to the many, many new friends they all met, and the old friends they have known at this most incredible conference.  They inspire each other to do better.  The push each other to the limit to succeed.  They have instilled in each other the absolute belief that quitters never win and winners never quit………what are you doing to get back in the game?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.