Don’t You Miss…….??????

ShipI’m always surprised at one of the questions I receive, very frequently, in this journey.  I do hear, “Do you really think there will be a cure?” often (and yes I do, with all my heart) but I hear one particular question from those who do know me that always strikes me with surprise.  That question is; “Do I miss acting?”

For those who do not know, acting, the theatre and beyond, has always been my dream since junior year in high school when I appeared in my high school production of Godspell.  It would be my first professional show (got paid) and would also be included in my first stint at Summer Stock in Salem, New Hampshire.  I was, and still am, a member of the acting Unions (SAG-AFTRA; Actor’s Equity).  For years, acting was pretty much my life.

Being part of the long-running NYC smash hit, Tony ‘N Tina’s Wedding ,was an incredible experience for me (13 years) and many with whom I was privileged to work with, I’m still in touch.  Yes, theatre, television, movies, I was working in all of it and I LOVED every second.  But being involved in that world is only important because I loved it.  I know many people who were in many different professions when diabetes became the new normal.  I know many people who gave up what they loved as well.

And here is the thing; miss it?  Absolutely.  Regret it?  Not for one single second.

Perhaps I’m being naïve, and that’s okay because it’s my life and I can feel what I want; I also believe we will get to that goal I promised my daughter of a cure (and now my son as well) and the acting world will once again be in my life.  The goal became bigger than a spotlight; it became the welfare of my child.

If not for our children, then for whom?

What did you give up when diabetes became the new normal?  A Job?  A Career?  Sleep?  Not to mention the people who actually have diabetes, what we may have given up, pales in that comparison.  Share what changes you had to make.  This world of diabetes was NEVER supposed to be a profession for me.  One door opened, and another, and another, and another, and they keep opening all the time.  And as much as I keep at it, I also spend a good deal of my own time advocating for various other important diabetes issues.  This is our lives.  And quite frankly, I love it.

I have met some incredible people on this journey, many I love and some are even like family to me.  I think we have made a dent or two along the way as well in the battle.  A battle I will continue as long as there is a breathe in me or until my kids can have some means of a biological replacement producing insulin and monitoring their glucose again.  I have seen many management tools come, go, and even become much better; and I’m sure those efforts will continue with great successes; which is all good.

But I await until such time that this journey is complete….and I can return to my world which is…….to be, or not to be; that is the question?  Until that time I’m in it to end it.

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

Great People Help Our Cause; Diabetes—But it’s Still our Road to Pave!

Doris Roberts With the death recently of Doris Roberts, I reflected on not only just my meeting and working with her in diabetes causes; but with Peter Boyle and with many more in my life who chose to be involved.   Much thanks to the show’s Creator Phil Rosenthal, a friend from my Hofstra days, for caring so much.  I enjoyed working with them and they were not only incredible, they were professional and a delight to work with.  And they are now, both, gone.  A loss to the entertainment world and beyond.

But our mission remains, doesn’t it?  I feel almost as if I owe it to them to work harder; as if in their honor, but not only just their honor.  But many others as well.  It cannot and will not be ‘up to celebrities’ to achieve our goals; that task is ours to reach.

I have heard it said many, many, times.  At committee meetings, at event meetings, in the diabetes community and really across the board.  It goes something like this; “To be successful, we must ‘get a celebrity’ for the awareness of XYZ.”

Really?

First of all, God Bless all the celebrities who take the time from their busy schedules to take part in giving back, no matter what the charity.  It’s always GREAT to have a name representing any organization.  In the diabetes world we have certainly had our share.  Some REALLY BIG names.

But if I said; Dollars Against Diabetes (D.A.D.s Day/DRI), Walk to Cure Diabetes (JDRF), Tour de Cure (ADA) you would most likely know those names instantly.  These events have raised, in excess, of a billion dollars across the globe.  But here’s the thing, they did not gain recognition by celebrity involvement; they gained recognition by YOUR involvement.  You see in as much as celebrity status is nice to point to and say look who is involved; it’s the grass-roots efforts of the people impacted that make the difference……..people like you!

So when we read about another child dying from undiagnosed T1D, and we get angry; AGAIN—-do we actually do anything?  Maybe the folks at http://autoimmunediabetesalliance.org/ are onto something we all should jump on for this November 14th 2016; World Diabetes Day.   Imagine if 1000 people signed up to post 100 flyers in their community.  Imagine if these posters were in a location that were seen by just 1000 people in the course of the time they are hung in a library, a school, a supermarket etc.?

Do the math yet?

That would result in 100 million people seeing the message—-1/3 the US population.
Scouting troops, service organizations, school activity groups—–just print out 100 posters and get them up on or around; but by November 14th.  You can go to the website above; they have great posters and so do:
http://www.testonedrop.org/
http://www.easet1d.org/
http://www.getdiabetesright.org
If you have a site with posters and you are not listed—-PLEASE FEEL FREE TO ADD YOURS.   There’s no monopoly on advocacy.

I enjoyed working with the celebrities over my tenure in this journey.  Many of them.  But still to this day the biggest and best way to get the word out is by us, getting the word out.

If I get enough feed back on this idea, I will reach out to the autoimmune diabetes alliance group to see if we can create a way for everyone to post where they will be running with this idea, wherever in the world.  It was their idea in the first place; and it’s a GREAT idea.

This November 14th; Operation: No More Missed Diagnosis of T1D……………..maybe we can even get a celebrity spokesperson?  You In?

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

If Diabetes was Personified, What would it LOOK LIKE…….to You?

darth vader IIDid you ever wonder what diabetes would look like and sound like if it was personified? Would it be a raging monster with fire coming out of its nose?  Would it be a person who looks sweet enough to invite in and then devours everything in sight?  Would it be a kicking, screaming little kid that you just can’t quiet no matter how hard you try?  What do you think diabetes would look like?

For some reason I have always felt that diabetes had a voice like James Earl Jones.  I don’t know that I actually envisioned what diabetes looked like; just that it sounded like the great actor with the booming voice.  I’m not sure why that is, but when James Earl Jones speaks, one is surely inclined to listen.  And to listen to every word.  He demands that respect.  When diabetes ‘has something to say’, do we not do the same?

I’m sure James will not be happy with me that I gave his voice over to the personification of a disease-state.  But imagine what your day would sound like if you woke up in the morning and you heard THAT voice inform you, (now picture James talking to you) “I took over your child’s night and I kept them up with my unyielding desire to keep blood sugars out of control.”  Couldn’t you almost picture that voice?  Maybe my thought is reinforced with the notion that James is also the voice that played such evil as Darth Vader….that kind of makes sense also….doesn’t it; diabetes and the ‘dark side’?

Here is the thing.  James Earl Jones is one of my favorite actors.  His speech about baseball in Field of Dreams is a classic and one of my favorite cinematic memories of all times.  And what bothers me most about my envisioning of diabetes having that voice, is no matter how great I may think it is, no matter how booming and intense it could be; if it was diabetes—I would still want it to shut up and go away.

Because even the greatness, and my fondness, of the great James Earl Jones would not make me like diabetes for even one second.  Maybe I’ll just go back to picturing diabetes with horns and flame-throwing voice, aggravating, screeching, and annoying character…….diabetes is not good enough for James Earl Jones….he deserves better, and in reality……..don’t we?

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

Join Us Tomorrow and Learn How You Just Might Save a Life.

Save a child's lifeThis is copied directly from the DPAC website page—–if, and I mean IF, I am considered an expert in any way, it is ONLY from working with so many of you who have done so much.
If You are interested in finding out what you might do in your state…..join us tomorrow (12 noon Eastern Time—link is below) and learn how you may save the life of those with the missed diagnosis of diabetes.  Thank you to diabetes megastars Benet Dunlap and Christel Aprigliano; for asking me to join you in this incredible initiative.

Ask An Expert: Tom Karlya – How to ROCK State Diabetes Advocacy

Tom “Diabetes Dad” Karlya joins DPAC to share the success of Reegan’s Rule in North DPAC_ASKanEXPERT_TomK RegCarolina as a precedent for other states.

Why we’re excited.

Tom knows that advocacy happens when people act and where they act. He will share the heartbreak that drove the creation of Reagan’s Rule and how we can honor the children who have been lost to a lack of a timely diagnosis of Type 1 diabetes by working with our state legislatures.

Children with Type 1 diabetes are being missed; their symptoms are dismissed as flu/virus initially; causing extended hospital stays, enormous loss of workdays, incredible family hardship and in some instances, severe brain damage and death in children needlessly.

Learn what has worked.

Join Tom Karlya and DPAC on April 28 at 12pm Eastern by registering here.

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

 

Who. who. who? WHO?

OwlUnfair insurance practices. Fund raising for diabetes causes. New laws needed to protect the rights of people with T1D.  Patients dying, or becoming seriously ill, because of the missed diagnosis of T1D.  Schools not understanding their students facing T1D. Diabetes in third world countries.  People unable to afford diabetes supplies.  Supplies covered, or actually not covered, by Medicare/Medicaid.  Meter accuracy.  Camps.  Diabetes education.  The list is almost endless.

When it comes to diabetes, there is NO SHORTAGE of causes surrounding the disease.  What there is a shortage of, are the people to get the job done.  The plain and simple truth is that if we, as a community, do not fight for these causes…..who will?  Who understands better than us?  Who can speak better than we can?

It is, and will remain, up to us.

If we take that as mere rhetoric, if we say I do not have time, or if we say let someone else do it……much WILL NOT get done.  And maybe I have to resign myself that it is what it is and what gets done will get done.  People who read this very well may be the very same people doing more than enough already.  And if that IS you, than thank you for caring.  Caring for my kids, and your kids, or yourself, or the millions of others out there who are on this journey.

It just seems to me, that if there are almost 30 million people living with type 1 and type 2 diabetes in the United States (worldwide, that number increases), and if each had two people who care about them; that is an army of 90 million people.  If just 1% of that number were ‘doing something’—-ANYTHING—-that would mean 900,000 people are doing something to better the lives of those who battle diabetes.

There are not 900,000 people doing something…….and that makes me sad.  Just 1%.  So I ask, with a list a mile long…………………who will make a difference?

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

Do You Know Anyone with T1D Who Might want a Baby Some Day???……Read…….

Ginger babyI’m not a person who merely likes Ginger Vieira, no let me be crystal clear about this from the get-go.  Ginger is one of those people who if you know her, just if you hear her name, you smile immediately.  It’s safe to say that Ginger is one of my favorite people in this diabetes world.

She keeps it real.  Her writings.  Her video blogs.  She says what’s on her mind.  She is funny, delightful, direct, and more than anything else; she is knowledgeable.  She has had diabetes for a long time.  She knows what it’s like to live with it and NO ONE shares what it is like as Ginger does.  She will make you laugh, cry and most of all……think.  When I found out that she was having a baby, I was ecstatic because if you know Ginger, you know that there would be one VERY LUCKY baby in this world.

Ginger’s entire persona is electric.

As is Ginger’s style; she wants to help others.  She is writing a book.  A book from the point of view of someone who has type one diabetes trying to fulfill one of the happiest dreams of any couple……giving life.

Here is the deal, and Ginger explains this on her video, women with type I diabetes having a baby, is a very small market according to those in the publishing world ‘who are in the know’.  But this does not change the fact that there are things women should know about having a baby while balancing type one diabetes.  So rejection after rejection led Ginger and her CDE Partner, Jennifer, to venture out and do this on their own.

I got involved.  But I got involved not because I think the world of Ginger (which I do).  I got involved because at some point in this world, my daughter with type one diabetes, will probably want to start a family.  I want this book on her shelf when she decides to do that.  I want her to hear from someone who knows.  Someone who has been there.  I want, as I have always wanted, for her to have the tools to make sure diabetes does not get in her way, yet again.

I want her to do that badly enough, and I trust Ginger well enough, to help her get there.

If you have a daughter, or had a baby, or know someone with type one diabetes, help Ginger and Jennifer prove the publishing world wrong showing just how important this book about being pregnant, and having type one diabetes, will be by giving a couple of bucks at their program on kickstarter.  They have 32 days to raise just $3,000.  A whole bunch of people giving just a couple of bucks…….very doable.

Click here to see Ginger’s incredibly charming video (THIS does not surprise me at all). And see how you can get involved. Even if you chose not to be part by donating, you will love her video.

Ginger is accomplished in many fields, book author, inspiring video blogger, inspiring blogs….she is not new at this ‘writing and inspiring thing’ and to be honest with you, I did not invest in this to help Ginger; even as much as I believe in her—–I gave a couple of bucks because my daughter will benefit from this book.  So will someone you know.  Take a look.

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

NEWSBREAK: Little Esme Gets Diabetes Supplies and……..an Apology!!

Esme SCORE ONE FOR THE DIABETES COMMUNITY TONIGHT.  I was contacted by Esme’s mommy, Faye, tonight and she informed me that not only were Esme’s diabetes supplies approved by her insurance company tonight but Humana Insurance Company apologized as well.

Little Esme captured the hearts and involvement of the diabetes community on Thursday when it was reported that she was denied a total of six times from applications and appeals to obtain a CGM and an insulin pump by her mom’s insurance company.  Esme was diagnosed in February 2016 and her pediatric endocrinologist rallied for Esme’s welfare to have the proper diabetes management tools.  After the word got out and the facts appeared to present the case as just a series of miss-steps in the insurance process leaving a two-year-old to receive the bulk of wrong doing,  the diabetes community reacted in full force.

Faye wrote to me, “We know that social media and the advocacy work done by so many (especially BeyondType1.org) played a HUGE part in the quick turn around of Humana. In fact, I am pretty sure we not have gotten the same result alone. We are so grateful and look forward to continuing our efforts to obtain long-term change for all families.”

For those celebrating the Jewish Holiday tonight, one person wrote to me and called it a “Passover Miracle”.  The job is done.
You did that.  To all those who wrote an email, you changed a life tonight.  You changed that life for better, forever.

Not bad for a day’s work.  Good job Diabetes Community……good job indeed.

Shalom.

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

 

NEWSBREAK: Can You Care Enough About This Face To DO Something……..NOW!!!!!!

EsmeI try not to get involved in situations that deal with what is covered and what is not covered via insurance companies.  There are just too many variables for all of us to understand.  But this……THIS is something we can do something about; and now.  We need to speak up when we can…….today is such a time.

This story came to my attention via my friends at Beyond Type 1; I wanted to find out a little more.

I spoke with Faye tonight.  Faye’s daughter Esme was diagnosed…….just in February.  Turns out Esme’s endocrinologist and her medical team all agree that Esme needs to be on a pump and a cgm.  Seems like Faye’s policy in her health insurance company agrees it can be that way too…….but the insurance company, Humana…..does not.

As Faye stated to me in our conversation tonight, “we wanted to play by the rules and do it right.”  Documentation done.  Application done.  Docs approval all done.   All set…right? Wrong.

Among requests and appeals Little Esme and her family have been denied of these life saving management tools…..not once, twice, three or even four times……but SIX TIMES.  It’s the choice of Esme’s doctors for this management therapy, who am I to argue?  Who is anyone to argue?  The most recent decision was made by Humana, according to Faye, “…by an oncologist….” and the “…external hearing may not take place tomorrow because they were informed that they could not find a pediatric endocrinologist.”

REALLY!

Enough……this is sickening.
If I have ever asked you to do something please, make this the thing you respond to; send Humana’s CEO Bruce Broussard an email and just ask for a fair hearing to save Esme’s life.  Email Mr. Broussard via email bbroussard@humana.com.  Let him know that the pediatric endocrinologist HAS spoken, Esme’s medical team has spoken, and all have supplied the necessary paperwork needed and her case should be heard and decided…….now!

Tell him to hear the case of Faye Kolly’s daughter Esme and make the correct decision on Friday.  Why should a two year old little girl get caught in this nonsense?  She shouldn’t.

Send the email tonight.  Help change a life.

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

NEWSBREAK: If Diabetes UK Recognizes Missed DX T1D; Why Will Not Diabetes USA???

Diabetes UKIf Diabetes UK recognizes that there is a problem with missed diagnosis causing the death of people with T1D (type 1 diabetes)—how long will it take for the United States to catch up?   Why must everything happen in the UK first?—-I applaud them for their incredible efforts.

How many more missed diagnosed patients must die before we step up?
Here is their story of their recognition.

My Heroes.  And if you do not think there are any here in the USA……give me a call and I will introduce you to many….starting with Little Reegan’s family.

http://www.walesonline.co.uk/news/local-news/parents-teenager-peter-baldwin-who-11186103

We must not be afraid to step up and do something……we must.

WHAT ARE WE WAITING FOR?

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

 

 

 

 

NEWSBREAK: SERIOUSLY!!!! Yes…Again. A Child Dies. Missed Diagnosed T1D

SantanaThis was taken from their “Go Fund Me Page”.
For the loss of my nephew, Kedrick “Santana” Callaway
He was diagnosed wrong at a hospital, to find out it wasn’t a stomach virus… to find his sugar was too high for him which caused him to unexpectedly pass away.
He was born: 2/11/03
He died: 4/8/16
His mom is…. Shamora “Hope” Hall
a wonderful mom, a single parent, busting her butt to work and provide for her kids.
—end

If you have a few bucks lying around and feel so inclined…..to help this family….click this link to go to their Go Fund Me Page.

Do you think people, advocacy organizations, and the health community will start to believe that we indeed have a problem going on here?  Do you think they will ever believe it enough to do something?

I’ll keep screaming about it until the SILENCED Children’s Cry for Change gets heard.
As long I have air in my lungs I swear this fight will continue…..until these kids voices get heard loud enough to foster change.

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