OPINION: If All Do Not Sit at the Table, at the Same Time, NOTHING will Get Done.

TableI received my mortgage bill recently from my bank.  There was an error in my amount of taxes.   So I called my municipal tax assessor’s office to confirm the error and they agreed.  I called my bank and informed them, they started a report (they always ‘start’ a report) and said they would look into it.  I called back in a few days and they stated they contacted the tax assessor’s office and that they were correct from the beginning and that I would be getting a letter…..from the report.

Uhhhhhhhmmmmm……I don’t think so.

After going around in a circle a few times, I got both the bank and the municipality on the call at the same time to stop the perpetual merry-go-round and we worked it through.  I will be getting the revised bill shortly.  Now those few sentences are about 6 hours worth of wasted time and energy, but when I got everyone together, at the table at the same time, as-it-were…..results.  Unless all the stakeholders are together at the same time it’s the gerbil in the never-ending spinning wheel.

Now hear me and hear me closely.  All of the government regulations, petitions, and meetings will not do anything substantial when it comes to the cost of insulin. Little will be done in tangible results.  At some point, the natural progression of the market and competition will do something to lower the costs and people will be jumping through hoops to take the credit….if that, indeed, ever happens.

Oh sure MANY, MANY really good things will happen that will REALLY, REALLY look good…..but it’s all for show to say to the world……”look what we did.”

But watch carefully….it’s all for naught.

But until such time as the stakeholders, the retailers, the producers, the manufacturers, all sit around the table at the same time to try to resolve this mess….and throw in a few elected officials to give a government perspective on the whole picture as well………..it won’t be resolved…….ever.  Please prove me wrong.  But if we want to see something significant happen with this insulin dilemma, get everyone involved at the same time at the same table and lock the door until a resolution comes into play….is really our only chance.

So either get everyone, EVERYONE, all together or, as I said, prove me wrong……..PLEASE…….prove me wrong.
I am a DiabetesDad.
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NEWSBREAK: No One was Better for Diabetes Causes than Mary….RIP

MaryI wish I could say I was a friend of Mary Tyler Moore’s, she surely made you feel that way.  There was a time when she, or her beloved husband Robert, and I would pass and a ‘hello’ was stated.  We knew of each other in the same battle.  She wrote a wonderful inscription in her book when she sent it to me to thank me on a specific project we worked on together and I will cherish it forever.

She THANKED me. Really?  Like I could ever be on par with what she had done over the years.  We worked together on fundraising, Washington DC advocating, and when it came to ANYTHING diabetes…..rest assured Mary was there in full force……how lucky was I to have just a little piece of life with this incredible woman.

It’s not often one gets to work with an icon, with a person who has her character-genetic pool somewhere in almost every comedic character to appear on TV—she was not the best—she was the best of the best and she did it—-while battling diabetes.

I have stated it before, and will always feel the same, no one in the celebrity world came close to do for the world of diabetes than what Mary Tyler Moore accomplished with JDRF.  Her efforts were tireless over the years.  She would attend events, meet with elected officials, testify before congress and yet, it was when she met those who lived like her….with diabetes, that I will remember most.  The time she took to speak to them and relate to them, to tell them they would be okay…..that is the Mary I will remember most.

Every organization under the sun wishes they had a spokesperson the caliber of Mary Tyler Moore.  Her connection with JDRF (and what was then JDF) was, and is, legendary.  She loved the JDRF and the people involved with the organization.  How fortunate they are, and were, to have Mary as part of their family.   My heart goes out to the many who worked with her at the JDRF, especially Karen Brownlee, who worked with Mary for years as the Liaison between the JDRF and Mary’s ‘people’.

Mary had but one goal when it came to diabetes….to bring to the attention of the world the battle of diabetes and how important it is to one day cure it.  How important it is to handle it.  Perhaps if she meant something to you, you can give a donation to JDRF in her memory (or to YOUR favorite organization). Mary would want it done that way.  I did.  It’s the least I could do for the woman who taught me to fight diabetes with as much fierceness as possible and at the same time; try to turn the world on with a smile…..which no one did better than Mary Tyler Moore

Rest in Peace friend, and thank you.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Are You Marching on Saturday???…Some Caution; I Care-Come Back Safely

womens marchI care about you and do not want you hurt in any way—-so I offer the following if you plan on utilizing your right to peaceful assembly this weekend–share with others.

If you are marching on Saturday in Washington DC or in one of the other cities, I share this with you.  In addition to trusting no one you don’t know (that means sharing any information or lending your phone for even a second), staying to the outside of the line, wearing comfortable shoes, staying hydrated, when you see a bathroom-use a bathroom, confronting no one, and buddy system, buddy system, buddy system—- and remembering that not everyone around you is there for the same reason you are.

Also—-electronically—-very useful information is below (I have not created this—it is out there–I’m just sharing because it makes sense):

1. Enable full-disk encryption on your device
Full-disk encryption ensures that the files across your entire device are encrypted. This is a form of encryption that protects data at rest, as compared to in-transit encryption, which protects data that is transferred over the Internet. Full-disk encryption protects everything from your local database of text messages to the passwords you have stored in your browser. This is useful in case your device is confiscated by police, but also protects you in situations where the device is lost or stolen. Protest situations are often unpredictable, so losing your phone is a distinct possibility.

2. Remove fingerprint unlock
In the past, iOS and Android used the same password to both boot your phone and to unlock it. Recently, both iOS and Android introduced a mechanism to allow you to unlock your device with your fingerprint. This is a convenient way to ensure that you enjoy the benefits of full-disk encryption without sacrificing convenience. However, in protest situations we suggest you turn this functionality off. A police officer can physically force you to unlock your device with your fingerprint. And as a legal matter, while the state of the law is in flux, there is currently less protection against compelled fingerprint unlocking than compelled password disclosure. You can always add your fingerprint back to the device after you’ve left the protest.

In iOS, you can disable this by going into Settings -> Touch ID & Passcode and removing each of the fingerprints in this menu.

In Android, disabling this feature may depend on your device manufacturer. For Nexus devices, go into Settings -> Security -> Nexus Imprint and delete the fingerprints from this menu.

3. Take photos and videos without unlocking your device
Catching that perfect shot is something you want to be ready for, and powerful images can help bolster the cause. If you’ve chosen a strong password, entering it into the device takes precious time, and you risk the moment passing before you’re able to take the shot. Luckily, newer versions of iOS and Android allow you to take photos and videos without unlocking your device, giving you the time to capture the moment.

With Android Nexus devices, double-press the power button.

At the iOS lock screen, you can swipe to the left.

4.Install Signal
Signal is an app available on both iOS and Android that offers strong encryption to protect both text messages and voice calls. This type of protection is called end-to-end encryption, which secures your communications in transit (as discussed in tip #1). Other apps, such as WhatsApp, have implemented underlying cryptography. But we believe Signal is the better option because it implements best practices for secure messaging.

In addition to encrypting one-to-one communication, Signal enables encrypted group chats. The app also recently added the functionality of having messages disappear anywhere from 10 seconds to a week after they are first read. In contrast to some other services like SnapChat, these ephemeral messages will never be stored on any server, and are removed from your device after disappearing.

Recently, a grand jury in the Eastern District of Virginia issued a subpoena to Open Whisper Systems, the maintainers of Signal. Because of the architecture of Signal, which limits the user metadata stored on the company’s servers, the only data they were able to provide was “the date and time a user registered with Signal and the last date of a user’s connectivity to the Signal service.”

5. Use a prepaid, disposable phone
If you’re really concerned about the data stored on your device, don’t bring it at all and pick up a prepaid mobile phone. These lower-end devices can be purchased along with a SIM card at most large retail stores, and current federal regulation does not require you to show your ID (but your state may). Let your friends know your temporary number, and use this to coordinate activities. Remember that the location of mobile devices can be determined by the cell towers they connect to, so if you don’t want your identity known, turn off your prepaid device before going home or anywhere that might lead to your identity. Using GPS should be safe, since GPS is a receiver and does not transmit any information, but your device may store your coordinates. For this reason, we suggest you turn off location services. When you’re done with the phone, it can be safely recycled or discarded from a location that is not linked to you. Keep in mind that if you carry both your regular device and a prepaid one with you, the location of these devices can be correlated as a way to compromise your anonymity.

6. Back up your data
Take precautions to limit the possible costs that can be incurred by the loss of a device. Backing up your data regularly and storing that backup in a safe place can save you a headache later on.

7. Consider biking or walking to the protest
Automated License Plate Reader Systems (ALPRs) automatically record the license plates of cars driving through an area, along with the exact time, date, and location they were encountered. This technology is often used by law enforcement, or employed by private companies such as Vigilant and MVTrac who then share license plate data with law enforcement and other entities. Amassed in huge databases, this data is retained for an unknown period of time. These companies have lobbied and litigated vigorously against statutes that would ban the private collection of license plate data or otherwise regulate ALPRs. Effectively, your location can be tracked over time by your driving habits, with very few legal limits in place as to how this data can be collected and accessed.

Consider using alternative means of transportation if you would prefer that your movements and associations remain private.

8. Enable airplane mode
Airplane mode ensures that your device will not be transmitting for the duration of your time at the protest, and prevents your location from being tracked. Unfortunately, this also means that you won’t be able to message or call your friends, so plan accordingly. You may want to select a nearby meet-up spot where you and your friends can rendez-vous if you get separated. You may also want to turn off location services (as discussed in tip #6).

9. Consider alternatives to Facebook and Twitter
Facebook and Twitter provide a large user base for you to promote your cause, but these popular social media platforms also carry risks. Viewing an event page, commenting on the event, and stating your intention to attend are all actions viewable by law enforcement if the pages and posts are public, and sometimes even if the pages aren’t (subject to a court order). For actions that require a more cautious approach, consider forming a group chat via Signal as described above.

I know this is not diabetes, but many people I care about will be ‘doing their thing’ and letting their voice be heard, so I thought this information might be useful.
I am a DiabetesDad.
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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.
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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.
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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’

For One Brief Moment

christmas-dayFor one brief moment may you find the peace and solace you need to enjoy those around you.
For one brief moment, although you will never forget pain, be allowed to focus on what you DO have around you that brings you joy.
For one brief moment, may diabetes behave, to allow you to see the wonderful people who have come into your life and have helped you on this journey.
For one brief moment, may you hold your family close, knowing how brutal this life around us can be.
For one brief moment may you find the peace necessary to enjoy the holidays and understand what that baby born in a manger represents.
For one brief moment, should you not believe as I do, may your faith surround you with the hope needed to enjoy your holidays.
tomorrow will come.  The next ‘thing’ in our life will become present.  The sun will rise and with it may we realize that our similarities far outweigh our differences.
Happy Holidays to all and thank you for being……..you.
Much love always.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Oh…..It’s Butterfly Kisses…..My Baby Girl is Engaged!

kaitlyn-job“I think we have been apart too long.  I really just cannot exist without her in my life.”  And in an instant, all of the concerns about,; will he take care of her diabetes, will he make sure she is okay, will he care for her, will he…..will he……willl he???????
I answered him, “You not only have our blessing, we would be honored.”

And in those few words, I felt all of the energy run out of my body, my precious little girl, my baby girl, the one who “Daddy’s-Little-Girl” describes…..was being given to another man to become one.

Just like that.  Just that quick.  After 26 years 9 months and 13 days……my daughter would leave the shadows of her mom and me and become engaged to become one in another’s life.

He’s a good man.  He’s been part of our lives for a long time.  We have watched the two of them grow……apart….and together.  She’s now a nurse, he graduates the Police Academy early next year.  They will be fine.

My little girl.

Was it not just yesterday she had to climb to get upon my knee.
Was it not just yesterday we were rushing her to the hospital and diagnosed with diabetes.
Was it not just yesterday that I wiped her tears.
Was it not just yesterday that her feet were on top of mine as we danced.
Was it nt just yesterday that we started with butterfly kisses.
Was it not just yesterday that I was superman and could do anything.
Was it not just yesterday that I tucked her in at night and sang to her.

My little girl.

No man has been luckier than I to have such blessings.  Wedding plans are looking toward early 2018.  And at that time I will walk her down the aisle, I will lift her veil, I will shake his hand and pass her hand over to his.  She will change her name on that day.
She’ll make a promise,
And I’ll give her away.
Standing in the bride room
Just staring at her,
She asked me what I’m thinking,
And I said “I’m not sure,
I just feel like I’m losing my baby girl.”
Then she leaned over and gave me

Butterfly kisses, with her mama there
Sticking little white flowers all up in her hair
“Walk me down the aisle daddy, it’s just
About time”
“Does my wedding gown look pretty Daddy?”
“Daddy don’t cry”
Oh with all that I’ve done wrong,
I must have done something right
To deserve her love every morning,
And butterfly kisses
I couldn’t ask god for more, man, this is
What love is
I know I’ve gotta let her go, but I’ll always
Remember
Every hug in the morning, and butterfly kisses

I love you my baby girl.  Congratulations on your engagement.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Lilly Fires First Shot in Lowering Insulin Cost……Now We Need a War!

first-stepToday, Lilly Diabetes released an announcement that they are reducing insulin up to 40% for some users in the retail market.  You can read the announcement here:
https://investor.lilly.com/releasedetail.cfm?ReleaseID=1003887

Now this very well may not be for everyone and clearly will not work in all cases, maybe not even in a whole bunch of cases.  But it will help in enough cases to impact a good deal of lives, and that’s good.   Lilly deserves all the credit in the world for actually trying to do something, and being the first to fire a tangible shot.  Now naysayers might criticize it; but there is something in this release that is revealing when Lilly Diabetes President, Enrique Conterno, states that this is a ‘first step’, and I believe him.  I participated in the discussions mentioned and I can tell you this, Lilly is serious in their attempt.

Why?  Because as I have stated before, I’m not a huge fan of petitions.  From my days in government I know they accomplish little but good PR for the ones issuing them.  In government it’s pretty well accepted that the amount of signatures is directly related to the PR machine behind it and not really about the substance, personal letters are a different story.  What Lilly Diabetes is doing is an actual action step.  IT WILL NOT be for everyone and may also be for a smaller percentage, but it’s a step and when it comes to major companies, I will take any step than no step at all.

The diabetes companies are not alone in the price issues and the costs being so high to patients; and it’s my sincere hope that ALL the players involved can solve the issues themselves because I feel, as is more of the case than not; to have the government involved in trying to fix this will be a disaster—–it usually is.

So I applaud Lilly Diabetes and I know they are not done speaking with people trying to figure all of this out.  It’s also my sincere hope that ALL OF THE PLAYERS (including retailers and payors/insurance companies) sit at the same table at some point to actually do something constructive to help those who cannot afford these crucial diabetes needs.  Not merely to issue a press release in the first week after a meeting (who cares) but to construct a bridge of new ideas and out-of-the-box thinking with REAL solutions, because diabetes patients deserve at least that.

Agreed, what Lilly Diabetes has begun will not solve all the problems, and maybe only help a small percentage;  but actually helping a small percentage quietly and methodically for some sort of actual solutions are so much better than huge “look at what we are doing” campaigns that will accomplish little.

Patients need action steps and Lilly Diabetes, I hope, has just started the snowball to begin rolling down the hill.  Time will surely tell.  Bravo Lilly Diabetes.
I am a DiabetesDad.
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