Lisa Awards 2019, Powerhouses in Our Diabetes World and One Special Son

Ten years are a long time.  I just cannot believe that ten years have gone by that our sweet Lisa left this world.  But she went out with a voice shouting from the mountaintops and it is in the memory of that voice that I keep the promise I gave to my Little Brother (honorary), Mark, that in honor of his wife I would bestow The Lisa Award each year to those who understand The Power of One.

It is given to people who, in their own way, change the world just like Lisa did.  This is a VERY BIG deal to me because these award are not given lightly.  They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day.  My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer.  Lisa and Mark shared their writings of her journey, in real-time, with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

This year’s recipients are:
 
Aaron Kowalski, Ph.D. — CEO, JDRF — A 15-year veteran of JDRF and the first person living with T1D to lead the research organization, Dr. Kowalski has a strong record of spearheading impactful strategic initiatives and forging new partnerships from his previous role as JDRF’s first Chief Mission Officer.  But Dr. Kowalski is not a recipient of The Lisa Award just for his new role as JDRF CEO, it is because of his unyielding desire believing that good, is not good enough.  No matter where you look; running, riding, testifying, lecturing, one-on-one conversations and/or leading, he is a true living example of how important this Power of One truly is, he lives it.  Make no mistake, he will credit those he works with before taking credit himself, which only makes him even more deserving of this award.  When it comes to true diabetes advocacy and understanding what this world needs to become for a better world for himself, his younger brother, and the rest of the world living with this disease,
Dr. Kowalski is the absolute “Real Deal”.   I have had the pleasure and privilege to be side-by-side presenting with Dr. Kowalski and working with him in other dealings, and his brilliance is only outdone by his compassion to making a huge and true difference in this world of diabetes.  Great things lay ahead.  Power of one; indeed.


Kim May — President/Founder Nobox Creative — or perhaps she should better be known as supermom.  In addition to being the owner of a hugely successful Ad Agency in Amarillo Texas, Kim has never forgotten the day that she laid her almost lifeless son, at the age of four and with a blood sugar of over 1000, on a hospital gurney stating for the staff to get to work on saving her son from a newly diagnosis of type 1 diabetes.  Already a powerhouse in the community, she co-created GetDiabetesRight.org, a site dedicated to allowing people to download creative posters to be used for diabetes awareness within their communities on the warning signs of diabetes and what to do when these signs become evident.  Hundreds of thousands of posters have already been downloaded and distributed  Not nearly done with her efforts, Her Power of One continues as one of the founding and continuing Board Members of the Diabetes Foundation of Higher Plains in Texas which runs a camp each summer and also funds diabetes research.  She and her husband, Jentry, are hugely dedicated to their family and her two sons’ MANY activities, as well as the community they live.  Kim has left her mark on everything from museums, to churches, to Amarillo and Connect Magazine, to so many things diabetes.  Her Power of One is unyielding although she too, would be the first to say, she has a lot of help.

Matthew Carlinsky — Lisa and Mark’s Son.  As soon as I knew that Matthew would be one of the Lisa Award recipients this year, I wondered how far I would get before i completely lost it and the tears would flow.  For the record, the tears started before I finished typing his name.  And I’m sure they will continue, so I will just keep going.
The main reason for the tears is that Mark’s upbringing of Matthew and the fine young man Matthew is turning out to be is EXACTLY as Lisa would have wanted it.  Mark is not easy, he has always demanded striving for the best, mostly in himself.  To be able to do that in also a loving way to a son, and as a single parent is no easy task,  But right back at him, Matthew is no lightweight either. They surely bring out the best in each other. At the age of four, Matthew was dealt a blow that no child should ever have been given.  He lost his mom.  There is no doubt that Mark has kept Lisa’s memory deeply arrive in Matthew and it is what Matthew has done with it that, he too, is being awarded a Lisa Award.  It’s important that one remembers how important this award means to me, and remember what I have stated in the past, I do not give it lightly.  Matthew has not only accepted his Mom’s Power of One, he has come to own it.  As it was important for him to be helped by The Family Lives on Foundation, Matthew knew that in his Mother’s memory and teachings, it was time to give back, even at his young age, and give back he does.  Through the organizations “Traditions Program” kids get to relive an activity or tradition that was special to their parent.  For Matthew and Lisa it was Holiday and Birthday baking.  Cookies and cupcakes.  Matthew states that, “The Traditions program definitely helped me cope with the loss.”  But more than that and realizing that his Power of One could make a difference, Matthew turned all of this into a month long awareness and fund raising effort.  Being a member of his Oyster Bay High School’s National Junior Honor Society (which I’m sure mom smiles down upon as well), Matthew enlisted the help of his fellow students to raise the highest amount of money the high school chapter has raised in 17 years.  (Side note under the full circle ‘small world’ title, My wife, Jill, was a graduate of the same high school).  In the picture above, gone is the little boy sitting in his mom’s lap replaced by a strong young man and the photo shows Matthew addressing the crowd at the Foundation’s Annual Ball in Pennsylvania thanking them for recognizing his efforts.  He pledged to continue assisting Long Island Families involved with the Traditions Program.  Even as a ninth grader, Matthew is an absolute living legacy to his mom who believed that One Person can make a difference no matter where they are, or where they go, or what they do.

Congratulations to this year’s recipients.

I am a diabetes dad.
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’.