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’.

 

 

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’.

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’.

NEWSBREAK: CMS Says Yes to the Dexcom……WOW!

Dexcom G5In case you were distracted at the end of last week, a major development took place at CMS (Center for Medicare & Medicaid Services) when the decision was made and the agency stated that the Dexcom G5 Mobile was now determined to be classified in a benefit category as therapeutic; thus allowing the agency to cover the device for those people on Medicare or Medicaid.

HUGE!

Dexcom should be applauded for their tireless efforts in this area fighting for the approval of the device.  I get it, their stock soared upon the approval and hence, it could be said it was why they battled.  Dexcom is a business.  And in the world of diabetes, businesses that are run correctly, deserve whatever they are allowed.

Kevin Sayer, President and CEO, has run his Dexcom Company with diligence, integrity, they give back to the community, and if they benefit for fighting so hard so everyone wanting their CGM, even those on social services and not on commercial insurance, can get one…..more power to them.  Not to mention those turning 65 will now no longer lose their coverage for a CGM for merely getting older.

It’s no wonder that Dexcom seems to constantly show the business world of diabetes why their business objectives and business platform are second to none.  The diabetes community can only hope others take note and follow their lead.

You can read Dexcom’s press release by clicking here.

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