The World is a Little Vile Lately…….Yes?

VileThere is a line from the Dickens’ classic, A Christmas Carol, that I have always liked. It’s enough for a man to understand his own business, and not to interfere with other people’s. Mine occupies me constantly.

Now in the context that this statement was meant, Dickens’ is clearly showing how isolated Scrooge has made himself by cutting himself off from his fellow-man.  That said, In as much as I DO feel we all need to help others, I have found some solace in that statement of late.

If you see yourself in what I am about to say, think about it.  If it’s not you, than it’s not about you.  The reason I have taken solace in that phrase is that as I roam around and read various conversations, I’m absolutely floored at the absolute contempt people have been toward one another lately.

I believe, just me-DiabetesDad, that because someone very strongly is in favor (or not) of certain results, people, movements, etc.  should not allow people to say; “I know this is wrong to say but I just have to…….” and some long tirade ripping people apart follows.

Really?

The first amendment, again–to just me, also comes with serious responsibility.  It’s a huge responsibility and it needs to be taken very seriously by everyone.  The freedoms we express should be in check when it comes to the vile and poison so many are revealing—–ALL THE WAY ACROSS THE BOARD.

This hurts me so.

And because some do it, if we continue to believe that it gives everyone the right to do it; we could be in serious trouble.  I choose to focus on my family, my passions, and things which are important to me……”mine occupies me constantly”.

Friction and friction will only result in heat.  If more time was spent focusing on how to be part of the change, WHATEVER THAT BELIEF MAY BE, instead of contemptuously screaming at each other that it’s needed; might be a better use of our energy.  And if your inclination is to immediately respond to this article by blaming some entity and/or person; don’t give them that power over you.  That’s the easy thing to do

Teddy Roosevelt once said, “Do what you can, with what you have, where you are.”
The key word here is, “DO”.  Much energy is being spent in vile shouting, from ALL SIDES of this discussion, might we all be better off with more ‘doing’.

Be the CHANGE.  No one wrote a book about someone who was GOING to do something, they write books about those who fostered change.  How you get there, is your choice.

Just don’t do nothing.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Good-Bye 2016….and Thank……YOU!!!!!!

calendar-page-offWell tear the page off the calender, 2016 is history.  Much has surely happened this year and as I reflect on it, I realize that so much good happened in the year.  I know many feel differently, and that is fine as they are entitled, but I’ve never been one to stay focused on one item or one event.

I survived being at 9/11, I survived my child being diagnosed with diabetes, I have survived losing a brother (in law), a father, a father and mother-in-law who I cherished, a second child being diagnosed and an entire list of items that will depress you to know end–and many people over the years have been in office who I did not want or who I wanted…..and I will be danged if whatever this year bought will make me react any differently.

The sun will rise tomorrow and with it a new day. And it is THAT way in which I live.

I will choose the GREAT things that happened over the year in the battle against undiagnosed Type 1 Diabetes.  I’ll cherish Beyond Type 1, Insulet, dPac, Susan Weiner, Kim May, Michelle Berman, Debbie Healy, Bennet Dunlap, Little Reegan’s Family, Kycie’s Family, Elizabeth Stein, DiaBEAT THIS!, and those who have stepped on the gas pedal and chose to share their lives to end these occurrences and, in some cases, when they were even victims themselves.  I’m grateful to the many who gave a platform to spread the word.  I’M GRATEFUL TO THOSE WHO EVEN HUNG A POSTER TO SPREAD THE WORD.

I’ll cherish those advancing the better treatment for those who live with diabetes every day.  I’ll cherish those organizations who continue to help people, advocate, and spread the word.    I’ll cherish those who despite great odds, continue in that search for a cure. I’ll, personally cherish, a new granddaughter, an engaged daughter, a move to a new home in a new state, and always my wonderful family.

And I will always and in all ways cherish you.  You who inform me, you who challenge me, you who teach me, you who believe in just ‘not doing nothing’, you who choose to make a difference, you who are my brothers/sisters-in-arms in a battle none of us want to be part.

If 2017 is not what you want it to be, MAKE IT what you want it to be.  We cannot do anything about what may come our way but we can certainly control how much it impacts us.  May 2017 be happy and healthy and may your inner wishes come true. Thank you for being part of my 2016, I look forward to what 2017 may hold for all of us.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Twas the Night Before D-Christmas 2016

santa-moonWith special apologies to Clement Moore.   I present a tradition……an updated, ‘Twas the Night Before D-Christmas for 2016

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with prayer,
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; the so much good and fun,
Seems monthly there was news at Beyond Type1.
Away to the news to see who was a hero of fire,
It’s those who live with T1D who really inspire

As costs continue to rise on everyone’s supply,
So many wonder how they’ll get by.
D-bloggers continue to write of these capers,
It certainly can’t be left to all the newspapers.

While many wrote of Santa’s goodies in his sack
Many doing much more like those from dPac.
To those with diabetes these really are not funny,
You’re playing with lives; it’s not about money.

As parents search for the docs and schools that really do care,
So much about this disease just doesn’t seem fair.
But as we turn and realize the continual fear,
I have some wishes for so many during this year.

When you look outside at the fresh fallen snow,
Or out at the sea where cold you don’t know,
Think of those who inspire and soon you’ll see,
Those things have changed in the past and will continue to be.

Innovations like getting supplies to those in foreign lands,
There is Life of a Child, IDF, and a Foundation of Hands.
There were great ideas to help our kids remember,
Of those in the fight like Project Blue November.

We work very hard for a managed d-Life to be,
And there is much help like at CWD.
There was JDRF/Medtronic approved hybrid closing the loop,
And ADA’s Dancing Steps was really a scoop.

There are innovations and those like Tide Pool
And DRI’s BioHub news continue to gain fuel.
There are so many camps that continue to say,
Spend a week with us for an even better today.

From Faustman, ViaCyte an IRB survey from Glu,
Stopping missed diagnosis to end candles of blue.
So as the year ends and criticisms comes quick,
Good things will come, and not all from St. Nick.

So listen carefully as you think of all that is run,
There is so much more work that needs to be done.
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 will stop all when only 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 is Santa’s toy bag for sure,
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 DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Your Child can Receive a Personal Letter from Santa—-6th Annual Tradition Continues!

santa-from-videoSANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday 6th 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 theall 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 six 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 cn click the picture to see a really cute Santa Video about the personalized letters.   The deadline for participation is midnight on December 9th 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’.

Yeah, But….But…They’re on Immunosuppression…..Let’s Just Take a Look….

butWhen it comes to research, there are so many occurrences simultaneously that it’s very difficult, at times, to keep one’s hand on the pulse of so much activity. When it comes to the notion of research in our diabetes world, there is something I have noticed that I want to address. It’s this notion of the immediate discounting of research projects because the patient is on some sort of immunosuppression regime. I get it. More than that, so do the research centers.

Let’s be clear, this is about diabetes research as a whole, and not specifically of the work being done at any one place. I have a very unique perspective because of my constant involvement in the research world, and when it comes to that, I have often shared my thoughts and surely welcome yours.*

The people who undergo clinical trials are, usually, in a very dire position with their diabetes. It’s not as if there is a protocol in place and volunteers are merely chosen because they live with type one diabetes; there is more consideration than just that point. In many cases, due to severe glycemic reactions, these patients are in dire need of intervention. For whatever the reason, people seem to believe that patients in these protocols are just like their loved ones at home but are now on immunosuppression. I know this because I constantly see the comment from the uninformed, “Yeah, but they are on immunosuppression drugs” as if to discount what is going on.

Hypoglycemia unawareness is a very dangerous complication to having diabetes and usually required in many of the diabetes protocols to be involved in clinical trials; dealing with having something placed inside the patient’s body. This is not a phenomena of just having a low blood sugar; hypoglycemia unawareness stops people from functioning in a normal surrounding.  Without warning, to collapse from a low blood sugar…….again, WITHOUT WARNING.  It can make driving, functioning, and in many cases from even living alone extremely difficult. It’s very serious. So is severe hyperglycemia allowing for almost a constant threat of DKA.  Imagine the impact of having high blood sugar and keytones almost always.

When applying for a clinical trial these patients, after an exhausting process, have come to the conclusion that living with the immunosuppression drugs outweighs the quality of life they are presently living. Immunosuppression drugs prevent the body from rejecting anything not recognized ‘as self’ and usually not used in children unless their life is in jeopardy.  Understanding that point; if someone needed a kidney transplant, they would be on immunosuppression drugs; a heart transplant results in the same regime and yet, no one states, “ah yes but they are on immunosuppression drugs” because the procedure outweighs where the patient’s physical status is at the time of the transplant.

All things Islet Cell come into mind here. Donated, porcine, stem-cell derived, implantable device, and other means of placing cells in a patient’s body and functioning is an amazing progression to the end game being sought.  For the present, it’s in patients that need a better quality of life than what they have, living with this diabetes complication every day. And it’s just that, a severe diabetes complication.

Now in as much as these protocols occurring around the world are what they are; they are also MAJOR STEPS in every research lab’s Holy Grail. To perfect the process and create a protocol that someday CAN be used in everyone with diabetes, without anything else that must be administered. Of course that is what each lab out there searches continuously to achieve.

I have shared with you all a million times that my regret is that I have been at this for over 23 years. I have learned a few things. I lived in a world before the everyday use of pumps, pork insulin (although people diagnosed after 2005 might be more familiar with the word ‘porcine’ than ‘pork’ or ‘pig’—-oh we have come so far), and when the letters CGM were mere letters that followed BFL. There was a time this world emphatically believed that islet cells COULD NOT EVER function in another human being. IT WOULD NEVER WORK under ANY circumstances was the belief. My question, of late, has always been with so many labs doing SO MUCH regarding the use of Islet Cells; why is not every penny of research money in this world going to perfect the hurdles to MAKE work what we know CAN work?

So the next time you find yourself saying the rhetoric phrase of, “Yeah but they are on immunosuppression drugs……..” perhaps we might all be better served to ask, “Okay, it needs to work for my child to use it, but it does work in some, how can I help to perfect it?”  Of course this is just my opinion and as always, I surely welcome yours.

If it was said that one day we will walk on the moon, and we did; is it not just as important for us as parents to say, one day my child will walk without diabetes.  As it stands now in our diabetes world, we have one small step for man……..it’s the next large leap for mankind that needs all of our attention.

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

* My disclaimer is, as always, that I have chosen to be an employee of the Diabetes Research Institute Foundation which supports the work of the Diabetes Research Institute at the University of Miami Miller School of Medicine.

A Line from an Award Winning Play…….Describes Life.

Our town“Do any human beings ever realize life while they live it?”   One of my favorite plays to both read and to have performed is Thornton WiIder’s Our Town.  Pictured above from over 35 years ago, this one line still resonates with me so many years after I played George, in a truly wonderful production.  How would you answer this question from the classic?

On this night my Brother-in-law, Jon, was joined by other Detectives in their retirement dinner.  For over 30 years he served a community and saw things that he will never talk about and did his job with dignity and honor.  In his ‘thank you’ speech, he emotionally mentioned his Mom, Dad, and brother (a Vietnam War Hero) who are all deceased; and how he wished they were with him on this night.  And perhaps because this is also the 7th anniversary of my dad’s world departure, well it’s a tad emotional.

The people who came before us.  They mean something, they really do.

Your kids are not wearing an insulin pump because it just appeared.  CGMs did not just come into being.  Anything you use today to manage your diabetes did not just magically happen.  Things came about because years ago someone had a vision.  Someone believed that our world could be ‘better’…….and they set out to make it that way.

I stopped counting how many times I picked up the phone to ‘talk baseball’ with my dad realizing that it could not happen.  His voice is silenced.  But I have learned to appreciate the many things he left for us to still enjoy; because they were his, and he gave them to us.

It is this appreciation that makes me realize the things we now have should never be taken for granted and should be understood for what they were/are.  Perhaps not perfect when they were first introduced, but progressed and have been perfected into something extremely useful.  Something that has changed our lives.

My dad loved science and medical advancement.  That interest was passed on to me………and I love learning all I can regarding what impacts my children and their living with type 1 diabetes.  I think of him with each new development in our diabetes world because he left that love to me and it has served me beyond measure……………..I only wish I could have one day to talk to him about all of this exciting stuff again.  Even an hour, I would take.   Even a minute.

The main character answers the question posed above, in the play, when he responds;
“No……………………………… Saints and poets maybe…they do some.”

Sigh
I miss you Doggie Daddy……….still.

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

 

Please DEAR GOD, What Will it Take……UK Tribunal Hears of Death Due to Missed DX T1D.

Clair TaylorI AM SO ANGRY.  She is gone.  It happened in 2012.  Now a Medical Practitioners Tribunal Service in Manchester, UK, is hearing the case to see what can be done about it.  Claire Taylor was a talented dancer and baker who wanted a career as a dietitian as her older brother Andrew had Type 1 diabetes.  Even with this knowledge, her diagnosis was missed being sick for up to two months prior to her death.

Read the entire story here.

What will it take for us, here in America to realize THAT THIS IS A PROBLEM here as well?  On a day I read that d-mom Debbie George was hugely successful in California with a Resolution passed 38-0 for better diabetes education; I’m reminded that too many do not find this subject important enough to tackle.

I plead with you,  Be in contact with anyone and everyone you know in this diabetes world.  We have an ADA conference approaching and an AADE conference approaching……please organize a group of people in the same room to discuss, at least, the missed diagnosis of T1D.  Even if we do not come up with solutions……please let’s just not talk about it thinking it will just ‘go away’.   It will not.

I have hugged parents who have lost their child needlessly. I have talked to top professionals in this field who say that diagnosis of T1D upon DKA is rising.  We pride ourselves in America as being leaders——PLEASE TAKE A LEAD from our friends in the UK…..let’s open a dialogue on trying to stop diagnosing T1D by being diagnosed in DKA.  This is one wound we can, and should, take everything in our power to prevent before the knife cuts the flesh.

Please pass this along to anyone you know in these organizations……..a dialogue can surely continue what has started in ten different states already.

What will it take?  PLEASE let’s open a dialogue.  It’s getting so tiring.  Why MUST it always happen again, and again, and again.  Take action—-ask the organizers of these conferences to hold a discussion……a simple discussion on this topic.  We cannot begin if we do not talk about it……..I assure you it will not go away!!!!!…….and in the meantime it will cost more people their very lives……..needlessly.

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

 

 

http://www.mirror.co.uk/news/uk-news/seriously-ill-teen-diabetes-died-7556080

Impossible………Really Means “I’m-Possible”…….to Make a Difference.

PossibleI’m always touched by the strength of families who do so much to make “Hope” a reality.  The biggest hope I will always have is for a cure for this disease.  I know, I know, I KNOW so many say that they are tired of hearing about a cure.  It has been promised so long.  The doctor said way back when it will be in just a few years.  I heard all of that also…..I also do not have an ostrich complex with my head in the sand.  I know the time upon the clock.

And still……..

The DRI had their walk last weekend at Marlins Stadium.   Thousands upon thousands were in attendance.  And wherever and whoever you support, you attend these grass-root-type-events also.  The next time you are at one, do what I do.  I look around at all the families that have been diagnosed more recently than in our household.  I look at the little faces who want a cure……….need a cure.  That hope NEEDS to stay alive UNTIL we get there NO MATTER how long it takes.

The fire in me will never die until we reach that goal we sought from the beginning, a cure.  Management devices are great, and ever-changing, but my goal has never changed since I stood by Kaitlyn’s bedside and promised her that we would get there.  Where is that promise in the world today?  Will we, collectively, be happy with just better management tools?  I welcome these management tools.  I do.

I have seen some of the most incredible advances in this area.  We were there before pumps were in everyday use; we were there when CGM were merely three letters of the alphabet;  glucometers took 90 seconds to give a reading; there was no computer chip on a test strip; insulin was made of pork……and much, much more,  We welcomed all of these wonderful advances.

And yet, and still, with all I have seen in my life,  I take each breath searching for the one and only thing that will make me sleep peacefully at night.  I think we need to get back to what every parents REALLY wants.  I think we need to end this thinking that something which can be grasped is so unreachable.  I think we need to stop listening to voices that  say, “Well sure the cure is important but we need to give all of our focus to a better device”.

Yes, we do need to give focus to better devices………but an equal and even thrust MUST ALSO BE GIVEN to VOICES pushing for a biological cure, where ever you believe that to be.   We walked on the moon…..the vision was given, work was thrust toward that end, and it happened.  Impossible just means I’m-Possible to make a difference.

Does a cure for our children deserve any less?  Do our children deserve any less?

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Parents, Like Protecting Lions, are the Diabetes ‘Blue’ Circle of Life

Blue Circle of LifeThe call comes in.
Another child is diagnosed with type one diabetes.
Another family is impacted and changed forever.
The call comes in.

I’m surely not an island when it comes to this type thing, many take the call when it  happens.  We have been there.  We become the ‘one’ people call for whatever the reason; for however the reason.  People hear of someone being diagnosed and they say, “….you need to call my friend, they are very involved……and they can help you.
The call comes in.

I hate those calls.  I certainly don’t mind helping in any way I can but I also am well aware……well aware too much what is about to happen in a household I do not know. I have been there……twice……I wish I never became aware.

One would almost think it gets easier.  It doesn’t.  All of the memories come rushing back to ‘that’ September 26th, or ‘that’ March 20th when my kids were diagnosed.  I now know what I know because going through it educated me like nothing else I could ever learn.  Nothing else compares.

That’s said, there were others helping us also in 1992.  Barbara, Faye, Karen, Marie, Jon, Charlie, Joe, Rhoda, Jane, and many others.  You see this is what we do, we are parents.  Someone was there for us and we are there for others……..it’s the Circle of Life. It’s the Blue Circle of Life in our diabetes world, something we would never see in the Lion King, but it’s there none-the-less.  You have helped someone else because someone helped you.

Read these words from the song, carefully:
It’s the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The (Blue) Circle of Life  

These words are us.  Share how your circle came about and how you continued it.
Today I say thank you to everyone out there who took the time to be part of this Diabetes Blue Circle of Life……and I thank those who were part of ours, so long ago but still remembered, when we needed it most.

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

 

 

Kids Who ‘DO’ Because They Care for YOUR Child with Diabetes

Hands togetherI have stated often that “I have to do this”.  For my kids, I would do anything and I do not merely get up in the morning, I pretty much jump out of bed because I know something GREAT will happen in this cause that has, in essence, chosen me.  It is pretty much the largest percentage of my day.  I have chosen the Diabetes Research Institute for the majority of my energy, both professionally and on my own to support, and you may have chosen something or somewhere else……and that’s just fine.

But we do what we do because there is passion in our hearts and a flame in our souls…..right?   But do you not just love observing the world around us and all those WHO CHOOSE to support the same cause as we do.  Do you not just marvel at the passion so many others show who do it because they believe as we do without the same connection we have to this diabetes world.

There are so many that ‘do’ and last night was a huge example of such an effort.  I was honored to attend, and be asked to address, the capacity-packed stands at West Broward High School for their annual DiaBEAT THIS! event sponsored by their student organization S.O.A.P. (Student Organization of Anatomy and Physiology).  I wondered, after last year, if the ‘wow-factor’ could possibly be repeated again this year.  How they ever out-do themselves each year is just beyond me……but they did—–and big time.

It’s not just the education about type one and type two which is everywhere you look throughout the building; it’s not just the fun-loving completion of the basketball games; it is not even the ‘magic’ of each performance from toddler to razor-sharp dancing, cheerleading, and music of the student body; no it’s more than all of this……it’s a unified spirit that, quite frankly, is rare at this magnitude.  This spirit creates an energy unlike anything I have witnessed before.

There is just no question that West Broward High School is incredibly adept at tapping into each student’s strength.  They live by the notion that the greater whole is only the sum of the parts……and ohhhhhh those parts……talk about a chain with no weak link in the entire length.

The energy is not just in the building; it grabs you, bear hugs you and charges you up from your toes to the top of your head; because the energy is in each person.  Students and faculty do not just say hi to you, they high-five you, fist bump you, and give hugs as readily as any group you will ever meet.  With the exception of the obvious age gap, the barrier of student/teacher is blurred of a hierarchy that can just be explained as a ‘we are’ attitude.  This is our school, all-of-our-school, and ‘we are’ West Broward High School.

From students who stop and pick up a piece of paper on the floor, to a faculty that sweeps if needed, to a student organization that decides it’s better to give back, but like everything they do at this wonderful school they only know how do things one way—–and when they give back they give back one hundred and fifty percent.

My eyes were wide open last night observing an incredible spirit; my ears were open last night enjoying beautiful sounds; my spirit was renewed last night by a group of kids and faculty who ‘just get it’; and above all my heart was touched last night, as a father of two kids who live with diabetes every day and really want a cure, by a community who said loudly they care and together we can all…….DiaBEAT THIS!

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.