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’.

Halloween and Diabetes….Be Afraid…..Be VERY Afraid……REALLY? Nope. Boo.

Insulin PumpFrom three years ago and updated but still a treat (get it?)…..enjoy.  Happy Halloween.

Within the next week will be Halloween. Halloween means so much to kids. Our kids with diabetes are no exception. I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her”, Was a common response.  Not really necessary, but we just said thank you for their thoughtfulness…..and they were very; thoughtful.  People can surely be wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that Kaitlyn would do that ‘going low thing’ and it would not only occur; but almost always at the exact same block each year. (Spooky, huh?)  She would carefully choose something out of her bag full of treats (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’—but letting her choose something from her Trick or Treat bag…why not?). We would wait a few minutes and continue on. Fun and frights continued.

By time she was out on her own in junior high school (in an era of no CGM like DEXCOM may I add) she was pretty well versed on how the drill worked on Halloween. In a recent conversation neither Jill nor I could remember any major adjustment on this date (and remember prior articles of mine stating Kaitlyn was considered as ‘brittle’, which translated meant she was extremely tough to control….it was a phrase we hated). On this day our kids strive and want to be just like all the others kids…….AND THEY SHOULD BE.

Let them.

I remember many conversations from people over the years who do not live with diabetes; how much Halloween must be a ‘disaster’ for us, having a child “who cannot eat candy”. People thought that we would deprive our child of this incredible right-of-passage. Those of us ‘in the know’ know better, don’t we? 😉

If you do not know….you should learn how close to normal you can make this day. Our kids are not driving close to a cliff during this day.  Don’t treat it as such.   Yes, be smart but every time you feel the word ‘no’ coming on……change it to making it about choices.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate, what ALL THE KIDS ate; and we went through it all like every other parent did each year (you would be surprised how much leeway THIS gave us on removing ‘stuff’, think about it).

We all do/did ‘Halloween’ things.

There are many things that you can find online about kids, diabetes, and what to do. Today I want to check in with where YOUR head’s at.  Parents? You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids while they enjoy the day.

Diabetes never stopped us on Halloween, never missed a day in all those years; and it should not stop you either. Go and enjoy. This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid? Nah…….enjoy; Halloween is nothing to ‘spook’ you.
…….and as a side note; Kaitlyn sits as an RN to take her CDE test in January.  Yes my dear colleagues/parents-in-arms…….They. Can. Do. Anything.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

NEWSBREAK: RYAN REED WINS IN DAYTONA…..Diabetes at 187 mph!!!!!

Ryan Daytona 2017I have no voice from screaming at the TV.
Car accident after car accident.
Two involving Ryan.
But still, he kept coming back.
And kept coming back.
In a race that went into overtime….
Ryan Reed won at Daytona tonight in one of the longest races ever on record.

BAM TAKE THAT DIABETES.

My heart was pounding through my chest as I screamed at the television watching this young man who not only has won over an entire diabetes community….today he beat three powerhouses with incredible driving to win….and win over the racing community with INCREDIBLE DRIVING………and won big in Daytona.

And yes he mentioned the wonderful folks at Lilly who sponsor him and yes, he mentioned that it is a big win for people like him with T1D.  He again showed poise, grace, and deflected all attention to his team.  Congratulations to his family, his team, and Lilly Diabetes for sticking with a winner.  Nice job, all.

But it’s Ryan at the wheel.  It’s Ryan on the gas.  It’s Ryan checking his blood sugars at 187 miles per hour.  It’s Ryan at the checkered flag.
LIVING with diabetes. DRIVE that home to your kids.

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

Good-Bye 2016….and Thank……YOU!!!!!!

calendar-page-offWell tear the page off the calender, 2016 is history.  Much has surely happened this year and as I reflect on it, I realize that so much good happened in the year.  I know many feel differently, and that is fine as they are entitled, but I’ve never been one to stay focused on one item or one event.

I survived being at 9/11, I survived my child being diagnosed with diabetes, I have survived losing a brother (in law), a father, a father and mother-in-law who I cherished, a second child being diagnosed and an entire list of items that will depress you to know end–and many people over the years have been in office who I did not want or who I wanted…..and I will be danged if whatever this year bought will make me react any differently.

The sun will rise tomorrow and with it a new day. And it is THAT way in which I live.

I will choose the GREAT things that happened over the year in the battle against undiagnosed Type 1 Diabetes.  I’ll cherish Beyond Type 1, Insulet, dPac, Susan Weiner, Kim May, Michelle Berman, Debbie Healy, Bennet Dunlap, Little Reegan’s Family, Kycie’s Family, Elizabeth Stein, DiaBEAT THIS!, and those who have stepped on the gas pedal and chose to share their lives to end these occurrences and, in some cases, when they were even victims themselves.  I’m grateful to the many who gave a platform to spread the word.  I’M GRATEFUL TO THOSE WHO EVEN HUNG A POSTER TO SPREAD THE WORD.

I’ll cherish those advancing the better treatment for those who live with diabetes every day.  I’ll cherish those organizations who continue to help people, advocate, and spread the word.    I’ll cherish those who despite great odds, continue in that search for a cure. I’ll, personally cherish, a new granddaughter, an engaged daughter, a move to a new home in a new state, and always my wonderful family.

And I will always and in all ways cherish you.  You who inform me, you who challenge me, you who teach me, you who believe in just ‘not doing nothing’, you who choose to make a difference, you who are my brothers/sisters-in-arms in a battle none of us want to be part.

If 2017 is not what you want it to be, MAKE IT what you want it to be.  We cannot do anything about what may come our way but we can certainly control how much it impacts us.  May 2017 be happy and healthy and may your inner wishes come true. Thank you for being part of my 2016, I look forward to what 2017 may hold for all of us.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Twas the Night Before D-Christmas 2016

santa-moonWith special apologies to Clement Moore.   I present a tradition……an updated, ‘Twas the Night Before D-Christmas for 2016

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with prayer,
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; the so much good and fun,
Seems monthly there was news at Beyond Type1.
Away to the news to see who was a hero of fire,
It’s those who live with T1D who really inspire

As costs continue to rise on everyone’s supply,
So many wonder how they’ll get by.
D-bloggers continue to write of these capers,
It certainly can’t be left to all the newspapers.

While many wrote of Santa’s goodies in his sack
Many doing much more like those from dPac.
To those with diabetes these really are not funny,
You’re playing with lives; it’s not about money.

As parents search for the docs and schools that really do care,
So much about this disease just doesn’t seem fair.
But as we turn and realize the continual fear,
I have some wishes for so many during this year.

When you look outside at the fresh fallen snow,
Or out at the sea where cold you don’t know,
Think of those who inspire and soon you’ll see,
Those things have changed in the past and will continue to be.

Innovations like getting supplies to those in foreign lands,
There is Life of a Child, IDF, and a Foundation of Hands.
There were great ideas to help our kids remember,
Of those in the fight like Project Blue November.

We work very hard for a managed d-Life to be,
And there is much help like at CWD.
There was JDRF/Medtronic approved hybrid closing the loop,
And ADA’s Dancing Steps was really a scoop.

There are innovations and those like Tide Pool
And DRI’s BioHub news continue to gain fuel.
There are so many camps that continue to say,
Spend a week with us for an even better today.

From Faustman, ViaCyte an IRB survey from Glu,
Stopping missed diagnosis to end candles of blue.
So as the year ends and criticisms comes quick,
Good things will come, and not all from St. Nick.

So listen carefully as you think of all that is run,
There is so much more work that needs to be done.
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 will stop all when only 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 is Santa’s toy bag for sure,
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’

For One Brief Moment

christmas-dayFor one brief moment may you find the peace and solace you need to enjoy those around you.
For one brief moment, although you will never forget pain, be allowed to focus on what you DO have around you that brings you joy.
For one brief moment, may diabetes behave, to allow you to see the wonderful people who have come into your life and have helped you on this journey.
For one brief moment, may you hold your family close, knowing how brutal this life around us can be.
For one brief moment may you find the peace necessary to enjoy the holidays and understand what that baby born in a manger represents.
For one brief moment, should you not believe as I do, may your faith surround you with the hope needed to enjoy your holidays.
tomorrow will come.  The next ‘thing’ in our life will become present.  The sun will rise and with it may we realize that our similarities far outweigh our differences.
Happy Holidays to all and thank you for being……..you.
Much love always.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Oh…..It’s Butterfly Kisses…..My Baby Girl is Engaged!

kaitlyn-job“I think we have been apart too long.  I really just cannot exist without her in my life.”  And in an instant, all of the concerns about,; will he take care of her diabetes, will he make sure she is okay, will he care for her, will he…..will he……willl he???????
I answered him, “You not only have our blessing, we would be honored.”

And in those few words, I felt all of the energy run out of my body, my precious little girl, my baby girl, the one who “Daddy’s-Little-Girl” describes…..was being given to another man to become one.

Just like that.  Just that quick.  After 26 years 9 months and 13 days……my daughter would leave the shadows of her mom and me and become engaged to become one in another’s life.

He’s a good man.  He’s been part of our lives for a long time.  We have watched the two of them grow……apart….and together.  She’s now a nurse, he graduates the Police Academy early next year.  They will be fine.

My little girl.

Was it not just yesterday she had to climb to get upon my knee.
Was it not just yesterday we were rushing her to the hospital and diagnosed with diabetes.
Was it not just yesterday that I wiped her tears.
Was it not just yesterday that her feet were on top of mine as we danced.
Was it nt just yesterday that we started with butterfly kisses.
Was it not just yesterday that I was superman and could do anything.
Was it not just yesterday that I tucked her in at night and sang to her.

My little girl.

No man has been luckier than I to have such blessings.  Wedding plans are looking toward early 2018.  And at that time I will walk her down the aisle, I will lift her veil, I will shake his hand and pass her hand over to his.  She will change her name on that day.
She’ll make a promise,
And I’ll give her away.
Standing in the bride room
Just staring at her,
She asked me what I’m thinking,
And I said “I’m not sure,
I just feel like I’m losing my baby girl.”
Then she leaned over and gave me

Butterfly kisses, with her mama there
Sticking little white flowers all up in her hair
“Walk me down the aisle daddy, it’s just
About time”
“Does my wedding gown look pretty Daddy?”
“Daddy don’t cry”
Oh with all that I’ve done wrong,
I must have done something right
To deserve her love every morning,
And butterfly kisses
I couldn’t ask god for more, man, this is
What love is
I know I’ve gotta let her go, but I’ll always
Remember
Every hug in the morning, and butterfly kisses

I love you my baby girl.  Congratulations on your engagement.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Lilly Fires First Shot in Lowering Insulin Cost……Now We Need a War!

first-stepToday, Lilly Diabetes released an announcement that they are reducing insulin up to 40% for some users in the retail market.  You can read the announcement here:
https://investor.lilly.com/releasedetail.cfm?ReleaseID=1003887

Now this very well may not be for everyone and clearly will not work in all cases, maybe not even in a whole bunch of cases.  But it will help in enough cases to impact a good deal of lives, and that’s good.   Lilly deserves all the credit in the world for actually trying to do something, and being the first to fire a tangible shot.  Now naysayers might criticize it; but there is something in this release that is revealing when Lilly Diabetes President, Enrique Conterno, states that this is a ‘first step’, and I believe him.  I participated in the discussions mentioned and I can tell you this, Lilly is serious in their attempt.

Why?  Because as I have stated before, I’m not a huge fan of petitions.  From my days in government I know they accomplish little but good PR for the ones issuing them.  In government it’s pretty well accepted that the amount of signatures is directly related to the PR machine behind it and not really about the substance, personal letters are a different story.  What Lilly Diabetes is doing is an actual action step.  IT WILL NOT be for everyone and may also be for a smaller percentage, but it’s a step and when it comes to major companies, I will take any step than no step at all.

The diabetes companies are not alone in the price issues and the costs being so high to patients; and it’s my sincere hope that ALL the players involved can solve the issues themselves because I feel, as is more of the case than not; to have the government involved in trying to fix this will be a disaster—–it usually is.

So I applaud Lilly Diabetes and I know they are not done speaking with people trying to figure all of this out.  It’s also my sincere hope that ALL OF THE PLAYERS (including retailers and payors/insurance companies) sit at the same table at some point to actually do something constructive to help those who cannot afford these crucial diabetes needs.  Not merely to issue a press release in the first week after a meeting (who cares) but to construct a bridge of new ideas and out-of-the-box thinking with REAL solutions, because diabetes patients deserve at least that.

Agreed, what Lilly Diabetes has begun will not solve all the problems, and maybe only help a small percentage;  but actually helping a small percentage quietly and methodically for some sort of actual solutions are so much better than huge “look at what we are doing” campaigns that will accomplish little.

Patients need action steps and Lilly Diabetes, I hope, has just started the snowball to begin rolling down the hill.  Time will surely tell.  Bravo Lilly Diabetes.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Survey Data on T1D Misdiagnosed (Partial Data)…….Is Now In! Read and Share!

proof-unidagnosed-t1d-proofWhat I am about to share with you, has been shared with me from our friends from Glu, a T1D exchange Community and T1D Exchange. I’m sharing it because so many have been inquiring as to the data from their extensive survey entitled: Driving patient-centric research: DKA & Misdiagnosis.

Let’s be very clear about these findings…..THEY ARE VERY PRELIMINARY and these findings will be reported in much greater depth and with additional context in publications.  This is in progress as we speak.  After you read this, you will have a ton of questions, and that is fine—-but please know that nothing more can be released at his time until the information is released in publications; when it will be accompanied by more thorough findings.

The study came about because in 2015 there were a few well-publicized tragedies involving children passing away as a result of type 1 diabetes.  In these cases, they were not diagnosed in time.  Discussions with KOLs (Key Opinion Leaders) revealed that there is not any large-scale, patient centric data available on the diagnosis experience.  Glu and T1D Exchange created a survey to collect this information.

The study was created based on seven tiers of interaction: Current events, Discussion with Key Opinion Leaders, Survey Design and Deployment, Analysis to pinpoint predictors (WHERE THEY ARE RIGHT NOW), disseminate findings, Raise Awareness, Affect change and prevent tragedy.

The survey was developed by Glu and the T1D Exchange Clinic Registry with an IRB approval.   2700+ participants’ response were tallied about their diagnosis experience.
Just some preliminary data from T1D Exchange revealed the following:
>35% of all participants reported that they were not diagnosed until more than one month after they noticed symptoms.
>41% of participants reported DKA at the time of their T1D diagnosis
>20% of participants report being admitted to the ICU at the time of their T1D diagnosis.
>24% of participants report being misdiagnosed with another condition at symptom onset.
>16% of pediatric patients were reported as being misdiagnosed compared to 39% of those diagnosed over the age of 18.
ANALYSIS TO BETTER UNDERSTAND THESE FINDINGS IS ONGOING

There will be much more data coming out on this but since so many have been asking, I wanted to you see just some of the data thus far.  What is now evident, at this point, is that now there should be no doubt that when 1 in 6 children and 1 in about every 2.5 adults are being misdiagnosed…….this country has a problem with T1D diagnosis.

When this battle started, it was very difficult.  We had nothing but a thought.  A thought and the belief that there was a problem coming from the so many I had been in touch with over the years.   With the outpouring of support from the diabetes community both during and after the news of Little Reegan and Kisses for Kycie interest grew; and grew quickly.

Now—-it’s a movement.  In as much as we all could shout from the mountaintops (and did), and even share the horror stories, the constant response was, “Yes, this is horrible but is there data showing larger proof?”  Now, we have indisputable data.  When I read the data, to be honest…….I burst out crying.  Now we know.  To the so many doing so much, and way too many to mention here, thank you.  To Anna Floreen, Danielle Gianferante, Dr. Henry Anhalt and all those at Glu and T1D Exchange, thank you for caring and creating this survey.  We know how much more work you will be doing and we look forward to the comprehensive final findings.

To all those who lost an angel in this battle, and to whom a solemn pledge was made not to not stop until we have changed this paradigm——I share this data but know that it is just a weapon to help us in this ongoing battle.  A big weapon.  We will not stop.
Onward.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

*preliminary data collected from over 2,700 individuals who participated in a 2016 T1D Exchange survey about their diagnosis experience.

Our Diabetes Journey…….Energy Better Spent…..Why Argue????

argueAt a recent event, I was engaged in a discussion with a couple who are ‘fairly new’ on this journey.  After a conversation on a myriad of topics the gentleman said to me, “Can I ask you something personal?”  Never one to run from such a question I answered, ‘Sure”.

“How do you stay at it?  We are so new at this and I am so confused.  Not by choices but by the so many who seem to know, telling me how, and what, I should do.  That all pharma is bad and greedy; that I should manage a child a certain way; that a cure is a pipe-dream…..how do you stay at it and who do you believe?”

How much and how often is that question place in front of our face?

I come from a political background.  I learned something a long time ago that has served me well both in my political discussions and on our diabetes journey.  The first thing I do is go into any discussion, like I know nothing.  That way I have opened the door to learn.   Many people get into discussions, to tell you their point of view and to justify the way they believe.  I don’t, and can’t, engage in that anymore.

I’m also a realist (thanks to mom).  In the last election, it was an absolute certainty that there would be a new President.  So I braced myself that a new one would be in place. My candidate not winning, or winning, only mattered to my personal belief, after that there was only one absolute certainty; the person winning is my President.  Me wanting or not wanting does not matter because for the next four years that person is sitting in the oval office.  I’m a realist.  Happy or unhappy becomes short-lived and the process moves on.

My energy is better spent on things I might have a chance of changing.  In my 58 years I have seen many things happen, I have seen many disasters (natural and man-originated); I have seen promises broken and kept; I have seen successes and failures; I’ve seen my share of a great deal…….and no matter what, on the next day the sun not only shined…….it shined brightly.

Diabetes, already unhappy with, I had to get to the point in my life that dealing with diabetes would become where happy or unhappy did not impact the end, I needed to accept what it is, and move on.

What I never gave much attention to is the wave of idle chatter.  When I hear about anything in the diabetes world, that I do not know about, I find out.   I don’t find out for someone else, I find out for my kids.  I find out for me.  I constantly tout that education is the equalizer in diabetes.  And THAT is the truth.  The more you know, the less trivial ‘arguments’ become important because you already know what works best.

I don’t get into discussions about pump or MDI (multiple daily injections); waking up to test or not; to give this food over that food; there will never be a cure or there will be; when I heard something, I investigated.  But THE ONLY THING THAT MATTERS is what I know to be true for us. Nothing else matters and probably should not matter to you either.

If people ask my opinion, if I have one and if asked, I will give it.  As my-brother-in-arms Jeff Hitchcock states constantly, ‘look at the data”.   I don’t listen to another’s opinion in data, I look it up for myself because I’m not in this battle for any other reason and I have too much work to do than to try to convince people about anything.

Share to engage in a discussion.  Engage in a discussion to learn.  Go investigate to learn.  At the end of the day it was/is up to Jill and I to decide the path to take….and we have; and we still do to this day. Some people share some of our path, and others have more differences than similarities in how we handle our diabetes journey.  And that is just fine.

In anything I have dealt with, it comes down to this; I work as hard as I can for something I believe in, if it comes out in our favor — wonderful; if not, I’m assured of one un-argumentative fact……that sun will surely shine, and shine brightly tomorrow.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.