DO YOU WANT to Make a Child’s Face Surprised…..Read Here to Find Out How!

santa-boySanta needs helpers this year.  Within the next few days, a Santa letter writing campaign will be announced by the Diabetes Research Institute Foundation.  People request letters, PERSONAL letters, from Santa to their child.  Perhaps Santa will mention what they want for Christmas, or the name of their pet, or even that a child is doing well while managing their diabetes.  All personal.

Well Santa needs elves to help write these letters.  Marie is the head elf and she coordinates this great campaign each year and she will explain the program.   It’s simple and you will feel so good knowing what a child’s face will look like.  What Elf Marie needs from you, is just the willingness to respond back within 24 hours with a completed letter to a child; you are given what is needed…..Elf Marie will teach you everything you need to know…..it’s easy….you just need to be able to get the letter done within 24 hours.  You will FEEL SO GOOD doing these letters.

If you want to help, please email me at tkarlya@drif.org and write in the subject line Santa’s Elf; and I will pass along to Elf Marie who will reach out to you with further instructions.
Thank you for caring.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Hey, Can Your HS/College Kids Help the DRI Get $10,000?

halo-ice-creamNow I tried Halo, my daughter tried Halo Ice Cream, it’s a great tasting and pretty good nutrient value; and Kaitlyn informs me that her blood sugars did not spike when eating it.  So, not bad….in fact pretty good.  But of course, it’s different in each person as you well know.

Here’s the deal.  Halo Ice Cream will give $1.00 per Instagram hashtag
#RaiseYourSpoon.  Now, in case you are not a fan of this deal, I can assure you that it is the real deal.  So if you want to help us reach the $10,000 donation from Halo, here is what you do……grab a cool picture and go to INSTAGRAM, and hashtag it
#RaiseYourSpoon….for each hashtag on Instagram, the DRI will receive $1.00 up to 10 thousand dollars.  So ask your high school and college aged-kids to go to Instagram and hashtag a photo #RaiseYourSpoon.

If they/you do not have a picture, use the one here.  This is November, Diabetes Awareness Month……why not help raise money without having to give a penny, post the hashtag #RaiseYourSpoon on a photo in Instagram and help us get to our goal of 10,000 hashtags which will translate into $10,000 to the important research being done at the DRI for a biological cure.

This is easy.  So help spread the word and help the DRI to receive $10,000 from Halo Creamery.  But remember to hashtag #RaiseYourSpoon on anything posted.  Share with your college kids and high school kids and ask them to share with their friends. They can share on FB and Twitter but the hashtag ONLY counts on Instagram.
Thank you.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Fair disclosure—as most know already, I’m an employee of the Diabetes Research Institute Foundation.

On This World Diabetes Day……I Think……of You!

birthday-cakeWhen Lou Gehrig retired from baseball he said, in his farewell speech, that he was probably one of the luckiest men on earth…..I know the feeling.  Not because of diabetes, I wish that was not in the factoring at all but in a way it is.  What is in the factoring……is YOU.

If I attempted to name the so many people who have taught me, showed me, challenged me, and above all; enriched my life since beginning this journey–undoubtedly I would miss someone so I will not attempt it.  But that does not mean I think of so many on this day because I do.  It’s not because of diabetes we met, it is because YOU CHOSE not to accept the roadblock given to you.  There are millions of people with diabetes who I will never meet, but my life has been so blessed with people who have decided to just, ‘don’t do nothing’ that our lives HAVE BECOME entwined.

Because you chose to advocate, learn, share, give, take, and live by the rule that ‘diabetes just will not do’ in your life that our paths have crossed and I’m one lucky man for knowing you.

November 14th, the birth date for Dr. Frederick Banting who discovered insulin, and is recognized as World Diabetes Day is indeed, today.  My celebration will never be about diabetes, I hate it and want it eradicated.  I WILL, however, celebrate the lives of my children who live everyday to full gusto even with diabetes.  I WILL, however, celebrate each and every one of you who have blessed my life in this journey.  I WILL, however, celebrate all off those working daily to making a difference for those with diabetes to live better managed lives and hopefully a day when it will be cured.

That is World Diabetes Dad to me and I thank each of you for being part, any part, of this journey with us.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Something YOU CAN DO that’s REAL EASY for Diabetes Awareness Month

save-a-childs-lifeVery simple.  It has been all over social media that people are dying from the missed diagnosis of diabetes, and specifically type 1 diabetes.  We are entering flu season.
November is DIABETES AWARENESS month……help educate the public.
Here is a PSA to warn those, especially those who do not know anything about diabetes.   Copy and paste this link somewhere not in the diabetes community.  School FB page, team sports, PTA, local hospital FB page…..please consider posting it somewhere today……you just might save a life……and it is so simple….
copy-paste-post-done.
You’ll feel good about making a difference.
https://youtu.be/hm12lcM4zkI

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

 

It’s the Most Wonderful Time of the Year………..School Opens; of Course.

School Open T1DYears ago there was a fabulous television commercial for Staples.  The Christmas song is playing (sing along with me), It’s the most wonnnnn-derrrrr-fullll tome of year…..” and of course the camera pulls back to revel parents gleefully shopping for back to school supplies while showing the kids’ dour faces.
Click here for the commercial. 

That time of year…….School’s open…..kids go back…..great, right?  Well not really for us parents of kids with type 1 diabetes (T1D).  But it does not have to be so stressful for you and/or your child.

After playing Drone-parent (what used to be helicopter-parent–hovering; what used to be diabetes-police parent) all summer, your child heads off, a little taller, a little more mature, toward the red carpet for kids (stole that from a commercial); the first day of school.

Where most parents, who do not have a child with diabetes, look forward to the new school year, parents to kids with T1D add two new words to their lives……HIGH ANXIETY.

From a guy who watched two kids go through school (with one child through every singe grade since age 2) may I offer a few tips on the school year.

1. 504 plan.  If your child does not have one, get one.  This plan is not just for the everyday things, they are for the unexpected things as well.
Here is a copy of the one we used, amend as needed.
and MAKE SURE NO ONE TELLS YOU THAT THEY UNDERSTAND and it is not needed…..it is your child’s right.

2. Feel free to send a quick note to all of your child’s teachers (yes, even in high school).  Above all else make it an open line of communication to you.

3. First day/week is a mind blower for kids as well….when they come home, do not jump on them ‘asking about their numbers’.  Ask them about their day, how was it, what did they like etc etc….trust me when I say the ‘diabetes stuff’ can wait a while.

4. By now you should have made time for the nurse and given her all of your child’s supplies.  If not, call and ask her if you can drop off your child’s supplies to be kept in the health office.  LABEL EVERYTHING with your child’s name, and have back-ups.

5.  Relax.  Now if you just dropped your child off at college I will change relax to have a drink.  If you think you have anxiety in school and high school, just  wait until you drop them off at college…..but we will save that for another day.

School’s Open……..Drive Carefully……and I do not mean only on  the roads.  Enjoy.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

NEWSBREAK: A PSA on Missed Diagnosis T1D—–PLEASE HELP GET THE WORD OUT!!!!

spread teh wordWhen doing a PSA or public service announcement, it’s always a fine line to capture all you can in just about 30 seconds.  I have been working on this PSA for months, understanding that the viewer will probably know little or nothing about diabetes.  Redoing, cutting, tweaking, and the entire time realizing that the REAL message holder is you; the video just reinforces your short message.

PLEASE HELP GET THE WORD OUT.  This is something WE ALL can do.

Please send this article to anyone in the diabetes community.
BUT……send the link to all of the social media locations that are not diabetes related.  PTA pages, your inner circle, sports pages, ANYWHERE there are parents…..it is a short video of around 35 seconds; BUT IT COULD save a life.  Most important is your quick personal message that accompanies the video.

This is the link to the PSA:
https://youtu.be/hm12lcM4zkI

Take this link and post it with your message.  Keep it really short;
“Hi, this happened in our house before we knew…please watch.”
“This is something I knew nothing about before it happened, please watch and be sure.”
“This 35 second video could save a life……please watch.”
“My child had this disease and we did not even know at the beginning.”

(If this pertains to you, and you feel so inclined)
“Our child became seriously ill, I thought it was just a flu.  Please watch.”
“We lost our child, how I wish we knew about this.  Please do not let it happen to you.”

I hope you like PSA…..let’s make a difference together….let’s get the word out there.

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

 

 

Diabetes is a Disease. Diabetes is a Business. We MUST FIND Middle Ground.

Middle GroundDiabetes is a disease.  No question to that point.
Diabetes is a business.  Don’t fool yourself for one second to think it’s not.

With the ‘buzz’ circling about the recent decision about insurance giant United Health Care allowing Medtronic as their preferred pump of choice and leaving others to scramble—-we need to take a hard look at this situation.

As I stated yesterday, this has been going on for some time and these decisions are nowhere near new.  I do not blame Medtronic, from a business perspective, who would not make this deal?  And it is there I lay my point for today’s article; ‘from a business perspective’.

As you are well aware, these decisions impact people.  Adults and children alike who live with diabetes (although United Health Care HAS STATED that at this time this decision will not impact children).  But as I stated and will continue to say; this recent decision is not a new development in how business works.  To all those who are out there now raising a ruckus about it for the first time, I state—-welcome to the party.

We can run around blaming Medtronic and United Health Care or we can bring our collective minds together to figure out how we can change the parameters of patient choice in this country that is much worthy a discussion than this recent decision. THIS IS THE DISCUSSION.  A huge undertaking.  But certainly worthy of a dialogue.  Not sure how to do this, but collectively we should be able to figure something out.  While we are at it; let’s bring a representatives/advocates from other disease states to the table…..they have to be fighting this battle as well, don’t you think?

As we look to collect the many stories out there, which we will need and I encourage you to share your insurance story here; I caution with everything I know that this is a roll-up-your-sleeves-and-dig-in kind of battle.  We MUST RAISE OUR VOICES but spending our energy blaming companies for their business choices is NOT the way to do it.  We have got to come together and figure this out.  We have to bring the right people in the room to advise us.  We have to collectively seek answers.

Certainly having a diabetes company involved with us in seeing the bigger picture cannot hurt.  Any takers?

Over the years there have been many large companies that have tried to change the parameters and have failed because, mostly, it was nothing more than a marketing campaign to ‘show’ how much they care.  If we all keep our focus on those living with diabetes and allow them the choices they deserve…..we can all win.  Having diabetes is no one’s choice; but the best way to manage diabetes……………absolutely should be.

Let’s come together and figure this out.  It has to make sense to the business platform as much as it does to the patient’s desire…….I’m confident there is middle ground.  Let’s come together and seek what could work for all.  Anyone want to meet?

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

NEWSBREAK: Diabetes Voices…..We REALLY Need You NOW!!!!

The problemThere are companies that serve the public with more feeling toward their stock holders than toward their patients.  I have said time and time again, health insurance companies fit this bill more than any other company I know.  I also believed that little can be done to fight these corporates giants…………..until recently.

There was a two-year-old young lady who was denied by Heath Insurance giant, Humana, an insulin pump and a CGM even though her doctors stressed the importance, their policy allows it, and her mother followed every step necessary in application and appeal.  But once the Diabetes Community became involved in an avalanche of feedback; the young lady not only received her devices; her mom shared that she received a letter of apology from Humana.

Our voices were heard.

Little did I think, at that time, that it was a testing ground for a larger and swelling problem facing so many of the people who battle diabetes.  It’s actually a problem so many are well aware especially with the recent letter by a pump company that they were squeezed out of a health insurance company’s coverage-plan.  Insurance companies making decisions on what gets covered and what does not get covered.  Many times leaving the patient out in the dark on what to do.

Recently United Health Care made the decision that only one insulin pump would be their ‘preferred’ insulin pump leaving many to scramble or prepare to fight to keep the pump they use and have covered.  Another insulin pump company released a letter stating the unfairness this will be toward the many patients who use their pump, as well as others.   My cynicism tells me that the pump company was not as concerned about our welfare as much as their own pockets except that the company is Tandem, and Tandem is a different company for many reasons as many of us have come to know in the diabetes community.  That said, Tandem outlines a growing problem.  And the diabetes community is gearing-up to react.

Decisions being made that patients have little, or no, say but must bear the full force of inconvenience and or healthy concerns needs to be changed.   This is about insurance companies making decisions based on ‘bean counting’.  If 70% of their covered patients use the device, and they can negotiate a really good price and under-cut the competition; great for the 70%.

Problem is, that leaves 30% of a health insurance company patients to figure out if they are ‘grand-fathered’ in or fit the bill or have to switch devices.  Multiply that by quite a few insurance companies….and we have a problem……a BIG problem.

This problem is growing.

What I learned from our situation with Humana, is that our voices matter.  But they must be loud; and they must be clear.

This is not about one insurance company’s decision; this is not one diabetes company accessing a better deal for their stockholders; this is about US.  US not having a choice in what decisions are being made, but yet, have to burden the brunt of something that impacts diabetes care hugely.  We need to have some say.  Right now we have little; if any.

We need to collectively do something.

The first thing we need to do—is collect stories—–lot’s of stories.  Let your voice be heard.  If you have been denied anything related to diabetes; if you have had your coverage changed; if your insurance company has changed anything and not asked your input in any or all of the examples listed, or you have your own story—-please share your story here.

There will be more on this topic in the future—-but for now—do one thing—–go to the link above and share your story.  Do not be afraid to use names and be brutally honest what it meant, and how it, impacted you.

The first step is to show a problem.  Please do so.  Click the link and tell your story.

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

 

A Little Girl Who Lost a Battle……..But in Her Name, the War Will Be Won……On Her Birthday.

Hailey faceToday is my birthday.  I am one blessed man.  For 58 years (I know, you thought I was much younger—-okay so lie, it’s my birthday) I have walked this earth and have met the most incredible people.  I AM ONE LUCKY guy.  My wish, as I blow out my birthday candles today will remain the same as it has been for over 24 years…..a cure for my daughter, my son, and all those like them.

But my birthday will mean something more moving forward.  Even after 58 years, we can be directed and redirected on this journey.  It changed last week.

Because last week,  I spoke with Vanessa.

Vanessa is a soft-spoken woman who lost her daughter, Hailey, just shy of her 11th birthday, when her type one diabetes symptoms were missed.  That was/is a horrible event that took place just over a year ago.  But Vanessa and her family are a family that believe that Hailey’s life, as short as it was, can have a huge impact on this world.

And she most assuredly will.

She has talked to Darice, Little Reegan’s mommy; and she is deciding whether it be; a law, an initiative, and/or a movement to instruct parents about diabetes awareness will be undertaken in Hailey’s memory.

I was on the phone with Vanessa for a long time last week.  I ask you, if Vanessa and her family are looking to do something meaningful to make sure what happened to them does not happen to others in her daughter’s name; who are we to sit idle?  Not that all of us are sitting idle but surely many more could do more to help.

So I’m inspired by those who have lost so much, so much more than I ever hope to, and continue to look for ways to endure the future and at the same time help others; others they will never know nor ever meet.  I get so much strength from these people.  How they continue is beyond me; and so inspiring to me at the same time.

As I closed my conversation with Vanessa she shared that Hailey would have been twelve this year.
“What date.”
“May 5th; Cinco de Mayo.”

Silence.

Yeah I know that date.  And now my birthday will always be shared with a young lady who will send me a butterfly each year (a favorite thing we birthday-buddies share), and I saw one this morning, to remind me that more work needs to get done.  Hailey sent it to me to remind me, message received.  And I pledge to you Hailey, we will get this done in your name, and the name of others, because we owe that to you.

Happy Birthday in heaven sweetie.

Love, your birthday buddy.

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

Don’t You Miss…….??????

ShipI’m always surprised at one of the questions I receive, very frequently, in this journey.  I do hear, “Do you really think there will be a cure?” often (and yes I do, with all my heart) but I hear one particular question from those who do know me that always strikes me with surprise.  That question is; “Do I miss acting?”

For those who do not know, acting, the theatre and beyond, has always been my dream since junior year in high school when I appeared in my high school production of Godspell.  It would be my first professional show (got paid) and would also be included in my first stint at Summer Stock in Salem, New Hampshire.  I was, and still am, a member of the acting Unions (SAG-AFTRA; Actor’s Equity).  For years, acting was pretty much my life.

Being part of the long-running NYC smash hit, Tony ‘N Tina’s Wedding ,was an incredible experience for me (13 years) and many with whom I was privileged to work with, I’m still in touch.  Yes, theatre, television, movies, I was working in all of it and I LOVED every second.  But being involved in that world is only important because I loved it.  I know many people who were in many different professions when diabetes became the new normal.  I know many people who gave up what they loved as well.

And here is the thing; miss it?  Absolutely.  Regret it?  Not for one single second.

Perhaps I’m being naïve, and that’s okay because it’s my life and I can feel what I want; I also believe we will get to that goal I promised my daughter of a cure (and now my son as well) and the acting world will once again be in my life.  The goal became bigger than a spotlight; it became the welfare of my child.

If not for our children, then for whom?

What did you give up when diabetes became the new normal?  A Job?  A Career?  Sleep?  Not to mention the people who actually have diabetes, what we may have given up, pales in that comparison.  Share what changes you had to make.  This world of diabetes was NEVER supposed to be a profession for me.  One door opened, and another, and another, and another, and they keep opening all the time.  And as much as I keep at it, I also spend a good deal of my own time advocating for various other important diabetes issues.  This is our lives.  And quite frankly, I love it.

I have met some incredible people on this journey, many I love and some are even like family to me.  I think we have made a dent or two along the way as well in the battle.  A battle I will continue as long as there is a breathe in me or until my kids can have some means of a biological replacement producing insulin and monitoring their glucose again.  I have seen many management tools come, go, and even become much better; and I’m sure those efforts will continue with great successes; which is all good.

But I await until such time that this journey is complete….and I can return to my world which is…….to be, or not to be; that is the question?  Until that time I’m in it to end it.

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