YOUR LAST CHANCE IS TODAY—-Do You REALLY Care About Those who Died?????

voice mattersOkay, I admit that the title was a bit much…..but so many who should be involved in this have yet to do so.  AND THIS IS SO IMPORTANT. Remember your anger reading about the so many who have died, or became seriously ill, because their diagnosis of T1D was missed?  Kycie, Little Reegan, and so many more…..remember?  How angry are you?  Angry enough to do something?

For the first time, there is an attempt to capture as much information and data as possible regarding this issue and YOU CAN HELP.  This is YOUR LAST CHANCE to be part of history because tomorrow……the survey is done.  Today is the last full day.

Because of the requirements of his survey….you must become a member of Glu. It is a great site asking great questions all the time…..you can choose to be part for as much or as little as you want; and for as long as you want, but to give this survey credibility, it is required by the ones who gave it an IRB Approval. (Institutional Review Board).

Go to www.myglu.org.  I purposely do not have a direct link from here to their site because if there is a link through ‘my cookies of my computer’ the survey will not be available because I took it already.

Once a member, go to the right side and click ‘My Diagnosis Story” and take the survey. It is there that you can share your story.  We REALLY NEED as many parents as possible so please consider it.

The name I gave this movement years ago was a Child’s Cry for Change…..please help those voices be heard……take the survey today.  Be counted.  Thank you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Hey, Moms of Kids with Diabetes—Olympic Moms have nothing Over You…..Take a Bow.

Olympic Rings MomsOlympic parents.  Specifically Olympic moms.  Ever see them in the stands?  Close-up, upon close-up, of the moms who know everything their child sacrificed and diligently worked at to be in the Olympics.  Proctor and Gamble even did a commercial about Olympic moms.

Yeah, so what.

Actually I don’t mean to belittle those moms and in fact I have great respect for them, But I also am very aware of a different kind of mom.  Moms who go through life with the same hope, the same expectancy, the same anxiety, the same disappointment, the same joy, and the same drive for gold…….but there is no camera showing a national audience the faces of these moms…..in fact there is not even a gold medal awaiting their child…….nit even a bronze….because these moms are dealing with diabetes in the privacy of their own lives, and not in a national spotlight whatsoever.

But make no mistake about it……those facial expressions that you see on TV with those Olympic moms are just as present on these special moms, and are there every day because moms of kids with diabetes are just as diligent, just as involved, just as hoping-for-the-best as any mom of any athlete competing in Rio.

And that’s you (yes, I know—-there are dads too).  So to all of those kids out there living with diabetes, this is to your moms who help their kids strive for gold every day in their own lives.  The gold of getting EVERYTHING life has to offer.  Moms do that.  Your mom does that.  So moms, Imagine your picture within the rings of the picture I included, these are but a handful of moms; but we know that you could fill the entire city of Rio, if you wanted.  Without fanfare, without spotlights, without commercials about what you do…..but just because you are you……you are, indeed, gold.

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

Dear CWD FFL…….Thank You for Saving My Children’s Lives

CWD FaceDear Children with Diabetes Friends for Life,

It’s been 17 years since we started together.  Wow!  Where did the time go?
I don’t know if I’ve ever said this to you before, so I’m sorry it took so long.
Thank you for saving the life of my first child, and also for saving the life of my second child upon diagnosis of this dreaded disease.

After 17 years I looked around this year’s event in Orlando last week and reflected on how fortunate I have been to be here, since day one.  To many, I guess, I’m a CWD FFL insider when in truth, I’m just a CWD Dad.  I volunteer here, and there…….. as so many others do.  None of us are your favorites but what we are is YOUR ARMY of volunteers because in the beginning people were there for us — we must now be there for others. If you are now involved, you should get involved to pass it on also.

You’re not a huge organization with a huge infrastructure……no…..you are a group of people, friends for life in fact, who believe in just plain ‘ol helping. Helping because a two-year old has been diagnose and there is nowhere to turn.  Helping because we are up at 2 am and we don’t have to explain it to you.  After years of turmoil and doubt, coming here we did something we had not done in a long time, we laughed.  That happens when people are comfortable with each other, they laugh.   That happens here.

There were so many sponsors present……but not all….not enough.   It bothered me that Medtronic was not there this year.  Not sure why, its none of my business really, I’m just a volunteer.  But when my daughter went on their pump in 1999, I guess families mattered back then.  I guess they don’t anymore.  I’m sure it bothered you also, and I’m so sorry that it’s such a struggle for you all who plan and coordinate this incredible event all year-long.

You should not have to struggle to get companies involved.  People in our world are VERY LOYAL.  Friends for Life also means clients, patients, and customers ‘for life’….and they should think about that a little bit.  You should not have to seek out companies, they should seek you out to learn how to participate.

When my daughter was a very young age, we learned that education was the equalizer to battling this disease.  We learned to do all we could to ‘own it’ so it would not own us. We were taught.  We listened.  And in-between all of the sessions of knowledge and the updates of research; we laughed.  We talked.  We grew to love people who needed no explanation when we had to do ‘something diabetes’…….they knew.

And after 17 years, I have watched so many children thrive in the world around them. Mine included……because of you.  Us parents learned a thing or two also.

We have been taught and taught well.  No easy feat.  In fact, an impossible feat if one dare to sit down and actually figure out how it all comes together.  But it does.  There is only one explanation that can probably explain it.  Sponsors who care, volunteers who care, families who care and all who dare to dream of learning together….because good friends do that, but those who do it to save the life of a friend’s child are more than just good friends………we are friends for life.
Thanks again.

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

Is Your Life Better…….Because of Diabetes?

betterNow hold on for a second and stay with me.  I have been at the CWD FFL conference this week and one of the speakers posed the question similar to what I asked in the heading.  Because of diabetes my life is better…….
I answered,  “It’s not.”
My positive attitude is not changed, my incredible life experiences are not diminished, my spirit is far from broken……what I said is that I’m not giving diabetes the credit for anything….it has taken enough.

Here’s why.

Children with Diabetes is the product of Jeff Hitchcock saying diabetes will not do; but Jeff did that, not diabetes.
Friends for Life is the product of Laura Billetdeaux saying diabetes will not do, but Laura did that, not diabetes.
The JDRF is the product of the Ducat and Lurie Families saying diabetes will not do, but they did that, not diabetes.
The DRI is the product of the Singer, Kleiman, and Mintz Famiies saying diabetes will not do, but they did that, not diabetes.
Almost anything positive, and there are many, that has happened in my diabetes journey has happened not because of a disease that has its only existence to destroy anything in the path of creating life saving insulin producing cells; but rather from the people who saw diabetes for what it is and changed the course of history despite of what diabetes ‘wants to do’.

Enriched?  On so many areas that I, both, cannot count and surely am not worthy.  Being enriched comes from the action of so many people who I have grown to love and my life would surely be emptier without.  It was the choice of people to enrich others; the sole purpose of a disease like diabetes is only to destroy….in my eyes the devil is not getting anything.  Actions of people caused the good.  I would change, in a New York minute, everything if I could switch back to my kids not having it all.  Who wouldn’t?  I don’t want to be ‘in this club’.  But I am; and I could not think of a more incredible group of people to be along side

But this is me.  And as many things that are on my mind, I bring it out to you for discussion and for comments to create a dialogue.  I still believe that people with diabetes are incredible and so are their caretakers (that’s you parents) and I’m inspired and amazed all the time.

I’m constantly amazed when someone tries something new to make a difference, like Beyond type 1.  I’m amazed at new technologies like “BAP” (that’s my acronym for the Bionic and Artificial Pancreas), the BIOHUB, new insulins, CGMs and so much more.

But everything good that has happened has come from SOMEONE saying that diabetes in the state that it is in, just will not do.  Why should we give diabetes the credit for that? Doesn’t it TAKE enough from us without us giving it more…..much less giving it CREDIT for anything?  Think about it and chime in.

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

We are America.

flagWe are America.
We are bigger than attacks knocking down our biggest buildings.
We are bigger than assassinations of our leaders.
We are America.
We are bigger than when our weakest are struck.
We are bigger when our strongest are made to fall.
We are America.
We have cheered our teams, we have buried our young.
We have lost jobs, we have cleaned the aftermath.
We are America.
We have survived for years, we will survived some more.
We are bigger than any one person, we are bigger than any one election.
We are America.
We believe in freedom, the right to say what’s on our mind.
We will die to defend those rights, we will die to protect our neighbor.
We are not perfect.
We have our faults.
But those stars and stripes mean something to us, you see
We are America.
We serve. We protect.  We die.  We live.
We move forward.
And today we celebrate.
Happy Fourth my fellow Americans.
God Bless America.

I am a diabetesdad.

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’