2016 Lisa Awards, A Family, Elected Officials, an Organization, and a D-Mom Blogger. YAY!

Lisa and MarkSo hard to believe another year has gone by.  Each year around June (her birthday), in honor of my friend Lisa Carlinsky, I bestow my Lisa Awards — kudos to people who understand the power of one person. To people who, in their own way, changing the world just like Lisa did.

My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would. 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 (her husband, who is as close to me as any brother) shared their writings of her journey 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.

So my 2016 Lisa Awards go to:

reegan sun glasses  The Family of Little Reegan.  As I thought about this, and after meeting their family; each and every one of them played a role in making sure Reegan’s Rule became law in North Carolina; the first of its kind.  Much has been written and many others became involved.  But when there was no one around, when there was no one fighting the battle, when there was no one to help…..there was the Family of Little Reagan.  They received a promise that their little girl would change the world.  With the  movement to stop missing the diagnosis of diabetes picking up steam, that promise will be fulfilled.  This one little girl, the power of one, in her short lifetime may very well impact the welfare of kids around the world more than those who have many more years to achieve it.

Representative Graham Senator Smith  Representative Charles Graham and Senator Jane Smith of North Carolina.  These two people could not be more different from their personalities to their political affiliations…..and yet….they reached across the aisle and worked tirelessly in the efforts to make Reegan’s Rule the law of the land.  One has no idea just how hard it is go through the entire process in making an idea become law.  The bipartisanship and the wisdom of these two elected officials are something the rest of the country should stand up and take notice.  Each a power of one in their own right, came together to accomplish the impossible; on October 20th, 2015, Reegan’s Rule was signed into law by the Governor of North Carolina.  Bravo to all who made a difference.

glu GLU/T1DExcgange is my third Lisa Award Recipient.  This organization is presently undergoing an incredible outreach to capture the data that could help present a roadmap of change in the years to come on the missed diagnosis of T1D.  Anna Floreen, Dr. Henry Anhalt and Executive Director Dana Ball (and Co-founder of T1DExchange) are the ones in the forefront but here has been so much work done from people we will never know to make their newest survey regarding missed diagnosis a reality, that truly the fair thing to do is pay tribute to the entire organization.  Many components making up the power of one to change the world we live in, GLU/T1SExchange embodies Lisa spirit as few others ever could.  This data will indeed change the world.

dmom My fourth Lisa Award winner is D-Mom Blogger, author and super advocate, Leighann Calentine.  Her Kids First, Diabetes Second has always been and continues to be a must read and her blog should be visited as often as possible.  Her wit, style, and direct-from-the-hip delivery will enlighten you, inspire you, challenge you, and let you on a little secret—-parents can really have a life outside this diabetes journey.  She is as humorous as she is poignant.  When reading anything she writes, one always feels like a really good friend has sat down next to you in the biggest easy chair to talk with you.  And like a true friend, she does not always tell you what you want to hear; she tells you what is real.  Her long list of awards and accolades are only surpassed by her huge heart to make a difference in our world.  She is a powerhouse, and all done as Leighann would do it…..with integrity and honesty.

So these are the Lisa Award winners this year.  And as always when I write this annul column, it brings me back to a woman who I cherished.  He son is growing-up to be a fine young man and in a wonderful way. Mark (my adopted brother), her husband, has found love again; as Lisa would want it.  And life is moving on.  But Lisa will always and in all ways be present.  And in as much as I love doing this article every year, I still miss our friend, Lisa.  She was some power-of-one.

Congratulations to this year’s recipients.

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

 

If We Have EVER asked You to Do and Share Something……THIS IS IT.

Kids Missed dxThere certainly is no secret how strongly I feel about the missed diagnosis of type 1 diabetes (T1D).  Many long hours after work and at lunchtime I spend spreading the word so we can stop the seriousness of kids seeing a medical professional with flu/virus like symptoms and no testing being done resulting, many times, in disaster.

I even created a ‘town hall’ survey to collect what I call ‘unscientific numbers’ on what was happening in this world……but important numbers none-the-less.  I was thrilled to announce recently that the folks at GLU/T1DExchange were creating a survey with an IRB (Institutional review board) approval to obtain REAL SCIENTIFIC DATA to show the world.

THAT SURVEY IS NOW READY.
Before I share that link, you need to know that you must become a member of GLU to take the survey and you will not be allowed to take it unless you do.  You can ‘opt’ out of any contact from them if you like, but they will be updating us on the results of the survey so you may want to consider hearing from them, and I leave that to you.  There has to be a control group according to the IRB regulations so you must join.

PLEASE KNOW HOW CRUCIAL IT IS FOR US ALL TO BE INVOLVED IN THIS STUDY/SURVEY ESPECIALLY IF YOU HAVE BEEN VICTIM TO THE MISSED DIAGNOSIS OF T1D.  IF WE DO NOT HAVE OFFICIAL DATA THAT WE CAN POINT TO, NO ONE WILL HEAR US.

Speaking as a parent to a parent, or an advocate to a person with diabetes; PLEASE take the time it takes to do this survey and PLEASE SHARE THIS WHERE EVER YOU CAN.  You all remember the faces of the kids I have posted today.  They SHOULD HAVE NEVER died.  You all read about them during and after each of the tragedies happened—-they died because their diagnosis was missed.  You have a story also. Some of your kids also got very sick as well…..we MUST be able to show and tell those stories.

On THIS we can make a difference.  On this we MUST make a difference.  Please take the survey and share this story anywhere you can so we can capture the most amount of people possible.  I’m so humbled and grateful to GLU/T1DExchange for hearing the Child’s Cry for Change from voices that can no longer speak for themselves.

Help us save lives and click here.

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

 

When a Pro Ball Player Walked Off the Mound and Into the Hearts of Kids with T1D.

Dustin and KidsI just love….LOVE; when someone in professional sports, who has achieved playing at the highest level and does it with type 1 diabetes (T1D), takes the time to encourage kids to do the same.  It is one of the favorite things about being in this diabetes world.  I try to arrange it any chance I can.  Our kids NEED TO KNOW that any dream can be grasped if they want it.

In this photo are Dustin and Jilly McGowan and his family (and his daughter also has T1D), Gary Kleiman (one of the founding families of the DRI), of course Billy the Marlin and a group of kids who all have T1D.  Dustin pitches for the Miami Marlins.  He does it while wearing an insulin pump.  To a full room of parents and kids, Dustin explained what it was like to play baseball at the professional level and to also do it while having T1D.

For an hour, before he and his family toured the DRI, Dustin signed autographs and answered questions—everything was on the table.
Who was your favorite team growing up?
Who was your favorite player?
Do you go high while oitching?
How often do you check your blood sugar during the game?

Such as it was when the McGowans, along with representatives of MLB’s Miami Marlins organization, came in full force with gifts and fun for a group of kids at the Diabetes Research Institute this week.  They also heard what exciting things were happening in the research world as well from a DRI scientist, who is at the major league level as well……not a bad day at all methinks.

And as Dustin was engaged in signing autographs, a small group of moms were with his wife Jilly asking questions of their own.  To see the look on the kids faces when a fun-loving mascot in Billy-the-Marlin came into the room to say hi, to the look of awe as Dustin encouraged them to seek out the best they can be in anything they do and to not be stopped by diabetes………well folks, that IS about as good as it gets.

I had a friend who played for the Mets, his name was Lee Mazzilli.  Lee, as an actor, was in Tony ‘n Tina’s Wedding with me many years ago.  His baseball stories were amazing.  On one conversation he stated, “Think how hard it is to get to major league baseball.  Every single player no matter how good, or not, was the best of the best of the best of the best of the best; wherever he came from.  Most people have no idea how hard it is to get to the big dance (major leagues).  The level of play is unlike anything seen anywhere else.  Every guy has a cabinet full of trophies and a book full of newspaper clippings because where ever he came from……he was the best there was.”

I never forgot that story because it made the ability needed to make it in the major leagues a vivid picture for me on just how good one needs to be.  Now add diabetes into the mix?  Well just incredible is what comes to mind.  And the faces of the kids in the room showed quite clearly that Dustin was quickly becoming a hero to them.

I think that anyone who ‘shoots for their goal’ while managing their diabetes can inspire others to do the same.  They beat incredible odds everyday.  A professional athlete has much on their plate, when they take the time out of their schedule to specifically ask if they can have an audience of kids, who live with diabetes, so they can see that their dreams can come true, “All I ever wanted to do was play baseball, and diabetes was not going to stop me”; well that is enough to warm any heart and worth it to see the look of absolute awe on every face in the room…………including mine.

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

 

My Quest Will Always be to Find that Cure, No Matter How Far.

Don Quixote 1Yeah, I get it.  The many years we have heard it.  The idea that pharma companies or the government is behind the stopping of it.  The notion that we should not get our hopes up.  The idea that it could never happen.  I have been at this for over 23 years and the one thing that keeps me going each and every day is that one day I will see my children cured of this disease.

Now my definition of a cure may not be your definition of a cure, they my not match exactly, and that’s fine.  My idea is that something biologically driven manages my children’s blood sugars with insulin delivery.  Now to be clear, the day the bionic/artificial pancreas does actually become a reality, that will be a great tool.  It will be a series of electronic devices to help manage.  Again, great tools.

I’m not chasing windmills here as my friend Don Quixote does in the story. I am chasing the real belief that we should never abandon the hope for a cure.  We should never accept the fact that abandoning the hope is a possibility.  It should not be a fluffy kind of ‘well sure there is a cure” but little of our effort will go there.  We need a full court press continually until we reach our goal.  Organizations and government alike need to be continually challenged on this drive.

We are still fine tuning and making better the use of glucometers and insulin pumps; the B/AP (‘BAP”—a super hero term meaning Bionic or Artificial Pancreas—a new word for your vocabulary) that you hear about now, will not be the “BAP” of tomorrow, and that is a good thing.  It will evolve just as the pumps and glucometers did and do to this day.

Insulin pumps and continuous glucose monitors—-all GREAT tools also.  I want it where there is none, or very little, human intervention in managing this disease.  I’m not under the false belief that these management tools will be anywhere near the way my child’s pancreas worked before diagnosis.  They, hopefully, will surely work better than what is available now, but to me—-that is not the end goal.  THAT is just not good enough.

But through it all, I do not want places like the Diabetes Research Institute and all those research places out there to EVER abandon the hope that we may have some sort of close mimic to the pancreas.  We need to keep driving these places to work harder, stronger, and we need to continue to support their efforts.

I have ALWAYS and in ALL WAYS believed in new management tools.  I believe in them with all my heart and soul.  But if it’s all the same to doubters and naysayers, I will also hold on to my dream of one day finding a cure for this disease.  It’s what drives me every day.  I cannot, and will not, ever abandon the very thing that got me started in this world in the beginning.

As the song states, I will go into hell in search of that heavenly cause…..no matter how far.  This, to me is my quest and it is not an impossible dream.  It’s a dream that we need to pursue, must pursue.  For me, my kids deserve nothing less.

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

Disclaimer–I’m employed at the DRIF which supports the DRI

We Lose a POWERHOUSE; and I’m Sad, So Deeply Sad. RIP Kitty.

Kitty 1I always LOVED this picture of Kitty.  The microphone was always as symbolic as it was practical describing Kitty because if there was a person with a TRUE voice in the diabetes community; it was Kitty Castellini.  Thousands of hours of broadcasts and tireless efforts in advocating for you, for me, for us in the diabetes community.

You can look around out there and read much of who Kitty was, the transplants she underwent, the pain she lived through……but there is much more about what Kitty did for others out there than what she went through herself.  She shared her own story only in the context to show that she could and would live this life to the fullest, and so could anyone faced with this disease.

She would be the first to tell you that she was a proud Union Member.  As many know, the Diabetes Research Institute has a great friend in the members of organized labor (North Americas Building Trade Unions) who organize the Dollars Against Diabetes (DADs) Day around each Father’s Day.  Kitty would remind me often how she was involved in helping this cause years ago, and how proud she was to have participated.  Her leaving us on Father’s Day, I’m sure, was Kitty doing it ‘her way’, so we are reminded for years to come.

She would call with an idea, an undertaking, or a possibility worth exploring.  There was ways to get the word out there….and there was also Kitty’s way.  Direct. Tireless. And with a warm smile.  Kitty’s way was as unique as it was wonderful.

Blue candle tearKitty left us yesterday, her husband notified the world on Kitty’s FB page, after a long, long battle; but with the people she influenced, myself included, her voice will be heard for a long, long, time.  Rest my dear Kitty.  I think I speak on behalf of the entire diabetes community when I say…..thank you, we are surely a better diabetes community because you walked among us.

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

Happy Father’s Day, from a DiabetesDad to Dads Everywhere, Especially Diabetes Dads

Diabetes Dad Logo no wordsIn the many times I am introduced to speak, I’m introduced as ‘the’– DiabetesDad.  My first word out of my mouth from behind the microphone is always the same….’a’…..a DiabetesDad.  Certainly not ‘the’.  Father’s day is this weekend and dads are kinda cool in many ways.  We don’t always get it right, and in fact I have a degree in getting it wrong.

My journey has allowed me the wonderful fortune of crossing paths with some really interesting dads.  Really remarkable dads too. Dads who try to change the world, to the dads who just try to change a child’s flat tire.  Dads who are incredibly adept in building things to dads who are better at cooking.

They operate anything that can fly, has wheels or can be controlled.  They can toss a child in the pool or a baseball at 93 miles per hour.  They can write a story like no other or they can tuck a child to bed with the best of them.  They can tell a joke that will crack-up a room or make a teen-ager cringe in front of her friends.

They can be lousy at directions, no matter what they may think; and may hate to be told what to do.  They are asked to fix things, many they can…….a few they cannot; and they try hard to fix those too.  They think they can sing, and some actually can; they can put a smile on your face during the worst crisis.

They know when a hug is needed, they know when a kick is better, and they have the best arms when needed most.

No, dads are not perfect.  Dads have many faults, in fact……..but they are……just that; a dad.  Hug them this weekend.  Love them this weekend.  Because one day you will be in the same position as I will be this weekend because my dad is gone.  And every father’s day is the same…..the reminder of what you had, held so dear, and had to say good-bye.

(Sigh.)

So happy father’s day everyone……and you too in heaven, Doggie Daddy.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Incredible News in the Battle Against Missed Diagnosis of T1D

Kids Missed dxA year.  A full year since I met Anna at T1DExchange and shared with her the vision to try to end, halt, or even slow down the missed diagnosis of T1D.  I needed help.  She listened, she asked a million questions.

I shared my town hall meeting survey with my questions.  “It’s not official, they were just from me as a dad….it has to be better.  The numbers have to be real, they need an IRB.  Mine was just to prove a point.”  We need questions that can paint this picture accurately and with the seal of approval of an IRB.

Anna asked a million more questions and assured me that we had her attention.  I just heard from her today and I can share with you now that the T1DExchange/GLU have developed a series of questions, submitted for an Institutional Review Board approval……and today I was informed of THAT approval which has now been confirmed and granted.

What is an IRB….from Wikipedia: An institutional review board (IRB), also known as an independent ethics committee (IEC), ethical review board (ERB), or research ethics board (REB), is a type of committee used in research in the United States that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans. They often conduct some form of risk-benefit analysis in an attempt to determine whether or not research should be done.

This means that with T1DExchange/GLU behind the survey with IRB approval, we may have an incredible set of national (and even international) numbers (thousands in fact)that the world can point to and say, “Look, THERE IS A PROBLEM.”  The survey will be released shortly to capture incredible numbers.

This took a GREAT DEAL of work and I’m humbled and thankful by both the efforts of Anna and Dr. Henry and everyone at T1DExchange in taking a concept (read the town hall survey results here) and also turning it into what can become one of the most comprehensive surveys to capture real numbers on the missed diagnosis of t1d ever assembled…….we can hope for that, and I will.

Onward…..we will make a difference.

And as excited as I am about this, every face that I have seen in this battle who we have lost come before me; and they remind me how we started, why we started, and why we ALL must make sure that this is stopped.

Stay tuned, as we will need much help spreading the word for the survey to be filled out; once released.

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

A Group in Myrtle Beach, SC, Reminds Us All Why We Ever Started.

Walk Myrtle Beach 1Yeah, it’s a walk.  Or a Walkathon.  A walk to…..  A walk for…..You know…….a walk.

But do you really know?  Do we REALLY know?

The ultimate ‘grassroots’ event is the walkathon.  Created, according to some accounts, by the March of Dimes Organization a million years ago.  Walks do not JUST happen.  They are hugely labor intensive.  When I landed in South Carolina on Wednesday, the JDRF Nation (which I understand to be, like a third-party event) group of volunteers organized a walk at the Pelican Stadium in Myrtle Beach South Carolina to benefit the JDRF on the following Saturday……why not I thought.  I went.  Boy was I glad I did.

No major staff time spent on this event—-it was all volunteers.  Kaitlyn’s Crusaders; Madi’s Dream….to Live for a Cure; Lynden’s LifeGuards, Sophie’s Squad, Violet’s Petals, Skippy the LadyBug were just some of the team names.  People impacted by diabetes.  People who wanted to do something, anything, to feel like they are making a difference.

The event was organized by Bonnie Mills.  A mom.  But not a mom to a child with diabetes.  She works for Sanofi.  She has seen diabetes for over 20 years. She has seen a lot.  She wanted to do more.  She does not have to do it and I’m sure, perhaps, her boss might even wonder…..why Bonnie does so much.  But to these parents, there is no question that Bonnie is the driving force behind this event……..and to me; that does makes good business sense.

But this is an event way beyond business.   This is an event that runs on adrenaline and passion.  Parents who told me it would be great if a cure could be found.  As Bonnie put it, “100 people or 1000 people, the spirit is awesome.” And she was right, it was.  It is.

From the prizes, to the group ‘All That’ who appeared on America’s Got Talent, to Raina who sang the National Anthem, to the American Legion Honor Guard, to Spiderman and Arial….but most of all…..to the kids.  The kids who live with diabetes who want a cure.  When you become involved for any length of time, you may forget how important these-type walks really are.

Not just for the money raised, but for being together as one unit who want to stand up and say, “…..diabetes will not stop us from anything.”  John, Kailyn’s dad tells her everyday that she can do anything, Madi states, “I have diabetes and I can do a lot of things”……..indeed.

One shirt had a bible verse on the back stating, “When you go through deep waters, I will be with you”, from the book of Isaiah and as someone from the team shared with me, “We’ve got this.”….yes, I believe you do.

If you need to remember what this ‘finding a cure thing’ is all about; or if you have been at this for a long time and think hoping for a cure is not worth the energy…….stop at a walk on a weekend.  In a stadium for a baseball team called the Pelicans, I found a group of people reminding all of us what ALL OF THIS FUND RAISING is all about……………it was, is, and has always been about the kids who need to have hope to hold on to.  That, like a walk in Myrtle Beach, South Carolina; begins with just one step.

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

NEWSBREAK: Restaurant Sign…..What Would You Say??????

Pig Pen….and there you go!  Saw this story reported by Jordan Davidson who writes for “The Mighty” who states this sign was posted in a restaurant in Watertown, NY called ____________________.  Well let’s just say there is a pig pen there in the name.

No comment—–it says it all right there if you ask me.

This story is so ridiculous that I almost think this was done so we would all write about the restaurant…….so I decided not to mention the name.

If all the people with diabetes are now in the bathroom, do the people who need to nurse now have to move to the roof?   C’mon folks—-catch up to 2016.

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

 

Sitcom Star Shares His Story on having T1D…..oh Yeah, He’s Ripped Too.

Derek ThelerBaby Daddy is a sitcom appearing on The Freedom Network (formerly Disney’s Family Channel). The character of Danny Wheeler is played by Derek Theler who coincidentally is featured in the June 13 edition of People Magazine.  Derek, as well as his sister, both have T1D. (To his parents, being in the same boat—give me a call we’ll grab a drink sometime)

Pick it up and read it.

Derek Shares what it’s like to not only live with diabetes, but he paints a picture…..a real picture on how it can be a struggle; and sometimes there are setbacks.  But the important thing is to keep going.  Keep trying.  He is the product of success with that philosophy.

There is a picture in the article with Derek without his shirt.  He is as ripped as any man has a right to be.  Clearly, and without question, right there on his body is where he wears his Dexcom continuous glucose monitor and his insulin pump.  The story is not about Derek’s body but when a man poses and has no qualms about showing off the diabetes equipment he wears and needs……well THAT is note-worthy as much as it is commendable (here is a link to People’s version of the picture)

SO read about this young man and how he does what he wants while balancing his T1D.  How he succeeds, how he has setbacks, but most importantly……how he lives. A must read for anyone needing inspiration. The article also shares how Derek moved to Los Angeles with dreams of becoming an action hero, how he missed out being cast as Captain America, but has not given up his dream of playing a super hero…….after reading People’s article about Derek…….to the millions of kids who need, and look for, inspiration…..young man; you already are.

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