RE-Search; to Look Again

Over the years, I have heard so many statements regarding and surrounding, research. Research, the action; research, the word; research an event that is not leading us to a cure fast enough. I read something very interesting recently about statins, the drug used to control cholesterol.

Seems back in the days this drug was being created, it went under much scrutiny. It also went under numerous starts and stops. Allegations of ‘quack-science’ to genius findings occurred until it became an accepted practice for treating something that surely has saved lives. One story that stood out was that when the first research of statins was underway, using rodents which is the standard beginning animal models, showed extremely disappointing results. Cholesterol was not being reduced as hoped. It was extremely disappointing.

One researcher, while eating eggs, had the brainstorm idea that chickens may hold a better answer than the usual rodents used in these studies. Knowing that eggs were high in cholesterol, would not chickens have a better shot to show results.
Sounds crazy, right?
Wrong. Turns out that rodent models have much higher quantity of the ‘good cholesterol’ than the bad. Turns out chickens have the opposite ‘make up’. Same science, different animals, had completely different results and science was back on track again to create the statins that would save millions of lives.

The word ‘re-(to do over), -search (to look for)’ making up the word research, to look again. Should you be despondent over the understood stages of research not occurring fast enough, know that at any given moment the tides could turn, and in some cases almost instantly with drastic results.

How many ‘flying devices’ blew up before we had the research for a manned aircraft that could take someone to the moon and back; or even as simple as flying from New York to Philadelphia. Trust me, it was never simple until someone proved it could be done. And yet, even at that thought, still some died in the pursuit of manned space travel. Any unknown, has a risk.

Is diabetes research where we want it? Do we have a cure? The answer to both, of course, is no. But as long as so many are pursuing the end game to biologically find a cure, we must hold on to that hope. I know individuals who have the opposite feeling of movements trying to stop advances, hiding potential breakthroughs, and just thinking that we will never see the results we want to see.

Personally, I just don’t believe it. Too many are trying to move science forward than moving it backwards. We need to continually challenge and follow research that someday could benefit our loved ones with diabetes. I will choose to believe that until we get to that cure. My kids deserve that, more than anything else.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes dad,  diabetes inspiration

D-Month…..over?….what?…..when?

November is over. Did you miss it? Did you do something for diabetes awareness month? Did you need a reminder that diabetes is in your household?

I get it. So many believe in the ability to celebrate a good life despite/in spite of living with diabetes. A time to let the world know, and help diabetes awareness, for an entire month. What a concept.

Not to me. November is the same as its 11 colleagues that make up a year. I celebrate, educate, advocate, and hopefully inspire (a little) 365 days a year. Telling someone who lives with diabetes that there is a month totally dedicate to diabetes awareness, the answer you will most likely hear is, “Thanks but no thanks—-I live with it 365 days a year.”

It’s nice that some roll out diabetes awareness month as is done with holiday decorations and celebrations. But in truth, we choose to celebrate our kids every day, a special month is not needed. What our kids do all year round is worthy to celebrate all year round.

It’s nice that some roll out the advocacy for diabetes causes during the month of November. But in truth, we choose to fight for the rights of those living with this disease every day we can. Insulin costs, rights, and the ability to have what everyone else has gets a full court press all year.

As I stated it earlier…..I get it……I really do. Blue, new, you, and what’s due are the voices loud and clear. Let’s just push as hard all year long. No matter how small or how large, “just don’t do nothin”—-but do it all year long.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes daddiabetes inspirationjust don’t do nothing



Two Moms Change Our Diabetes World

It amazes me sometimes when media skips something so crucial to our diabetes world. Nothing would make me happier than when this story is read, media sources who are so much more significant that my little column here reach out to these two women for the simple reason; their story needs to be read, seen, heard, and witnessed. People need to know that when they make the decision to “just not do nothing“; they can, and do, make a difference.

Many entities and people helped get this to California Governor’s desk (Diabetes Advocate Brett Michaels being just one), but before Senate Bill 97 became part of the highest level of funding bill in California history as part of a whopping 123.9 billion dollars for grades K-12, it started as just an idea. Moms Debbie George and Michelle Thornburg knew that the world could do better at recognizing the early onset of type 1 diabetes (T1D). They knew that it was needed to have the complicated conversations with doctors, nurses, teachers, and school staff on what type 1 diabetes entails, and provide a better understanding of the disease to help ensure the safety of their children, Sierra and Dylan. In doing so, they changed the parameters of diabetes education for all children in the state of California forever…….and it is up to the rest of the world to continue the battle……..but now, there is a treasure map to the promised land of riches; breaking down the misunderstood world we all know with our children living with T1D. Two moms said, “ENOUGH, WE CAN AND WILL DO MORE!”

Years ago when Little Reegan passed away from undiagnosed diabetes, her mom and legislatures in North Carolina passed an unprecedented bill regarding diabetes education. Both moms were in touch with those responsible back then in 2015 and made it their mission to take the same framework of the Reegan’s Rule law in North Carolina, build upon it, and move it through the governing halls of California’s State Capitol. A massive undertaking over five years in the making. When one starts this process, they start out as an advocate. The process is full of twists, turns, setbacks, successes, loneliness, promises of being helped also being broken; all out weighed by one concept, to get the job done. Upon finishing the job, these same advocates are then classified as experts because basically, they did the impossible. They took an idea, a much needed concept, and they made it law. Period.

The law states (click here to read the entire diabetes portion of the bill): The department, in coordination with any other entity the department deems appropriate, shall develop type 1 diabetes informational materials for the parents and guardians of pupils. The informational materials shall be made available to each school district, county office of education, and charter school through the department’s internet website.

THIS IS NOW A LAW IN THE STATE OF CALIFORNIA

THIS IS A BIG DEAL.

For all time, every state now has a road map to do the same. What began with Little Reegan, then moved to Pennsylvania with the efforts of another mom, Debbie Healey, has now graduated to the big time with a law specifically designed for money to be allotted to those undertaking type 1 diabetes education.

My face is streaked with tears as I write this because the deaths of so many paved the roadway for this much needed legislation. Debbie and Michelle have initiated something that is next to impossible to accomplish, and in doing so even created a nonprofit to continue the work they started (EaseT1D.org). More can do the same. Bravo ladies and a huge and deep bow of gratitude from all of us wanting a better world. Somewhere out there Little Reegan is looking down and smiling knowing that she continues working through others to change the world.

God works in that way.

What will you do about it?

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

It amazes me sometimes when media skips something so crucial to our diabetes world. Nothing would make me happier than when this story is read, media sources who are so much more significant that my little column here reach out to these two women for the simple reason; their story needs to be read, seen, heard, and witnessed. People need to know that when they make the decision to “just not do nothing“; they can, and do, make a difference.

Many entities and people helped get this to California Governor’s desk (Diabetes Advocate Brett Michaels being just one), but before Senate Bill 97 became part of the highest level of funding bill in California history as part of a whopping 123.9 billion dollars for grades K-12, it started as just an idea. Moms Debbie George and Michelle Thornburg knew that the world could do better at recognizing the early onset of type 1 diabetes (T1D). They knew that it was needed to have the complicated conversations with doctors, nurses, teachers, and school staff on what type 1 diabetes entails, and provide a better understanding of the disease to help ensure the safety of their children, Sierra and Dylan. In doing so, they changed the parameters of diabetes education for all children in the state of California forever…….and it is up to the rest of the world to continue the battle……..but now, there is a treasure map to the promised land of riches; breaking down the misunderstood world we all know with our children living with T1D. Two moms said, “ENOUGH, WE CAN AND WILL DO MORE!”

Years ago when Little Reegan passed away from undiagnosed diabetes, her mom and legislatures in North Carolina passed an unprecedented bill regarding diabetes education. Both moms were in touch with those responsible back then in 2015 and made it their mission to take the same framework of the Reegan’s Rule law in North Carolina, build upon it, and move it through the governing halls of California’s State Capitol. A massive undertaking over five years in the making. When one starts this process, they start out as an advocate. The process is full of twists, turns, setbacks, successes, loneliness, promises of being helped also being broken; all out weighed by one concept, to get the job done. Upon finishing the job, these same advocates are then classified as experts because basically, they did the impossible. They took an idea, a much needed concept, and they made it law. Period.

The law states (click here to read the entire diabetes portion of the bill): The department, in coordination with any other entity the department deems appropriate, shall develop type 1 diabetes informational materials for the parents and guardians of pupils. The informational materials shall be made available to each school district, county office of education, and charter school through the department’s internet website.

THIS IS NOW A LAW IN THE STATE OF CALIFORNIA

THIS IS A BIG DEAL.

For all time, every state now has a road map to do the same. What began with Little Reegan, then moved to Pennsylvania with the efforts of another mom, Debbie Healey, has now graduated to the big time with a law specifically designed for money to be allotted to those undertaking type 1 diabetes education.

My face is streaked with tears as I write this because the deaths of so many paved the roadway for this much needed legislation. Debbie and Michelle have initiated something that is next to impossible to accomplish, and in doing so even created a nonprofit to continue the work they started (EaseT1D.org). More can do the same. Bravo ladies and a huge and deep bow of gratitude from all of us wanting a better world. Somewhere out there Little Reegan is looking down and smiling knowing that she continues working through others to change the world.

God works in that way.

What will you do about it?

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

She is Riveting

Rosie the Riveter?  Ever see that picture?  She actually was not the original but she is surely the most well-known.  The one we know today came to represent the empowerment of women.  The ‘one we know’ was commissioned by the Westinghouse Company in 1942 to boost morale in the company.

But Rosie has come to mean so much more than just ‘a’ woman for ’a’ company, she has become the representation of a movement.  She has come to represent all women, in the battle of equality.  A battle that should probably have never had to occur.  But history had different roads of the same jobs being paid differently depending on who was doing the job. With the iconic phrase, “WE CAN DO IT”, it has been the battle cry for some time.  It has been the demand for “…..yes, we can!”

I was taken back recently by a picture I came across on the PEP Squad FB page.  It was created by Kara Mitchel and is of her daughter Avery.  Avery is 13 years old and was diagnosed at the age of nine.  Mom shares that Avery is not one to show off her diabetes gear but she is also happy to show that; “….she is kicking diabetes’ butt….” You GO GIRL! Just as the original poster was so much more than a meaning for or about one person, this Diastrong poster, featuring Avery, should be hanging in rooms across this country.  For that matter, it should be hanging in every pediatric-endo’s office in the world.

That little squint in Avery’s eyes states clearly that she ‘has’ this. She is showing confidence in the muscle she shows.   She could represent every child out there to say, “We Got This”.  We ‘got this’ thing called diabetes, we have it, we own it and it will not own us.  We are strong enough to handle whatever it is that diabetes throws at us.  The fact that Avery is wearing a Dexcom CGM lends me to believe that she should be given a spokesperson contract; call me I will gladly represent you with the Dexcom Company——this picture is THAT good.

So many times we look for someone to inspire our kids.  Sometimes it is a sports star or entertainment star sought after but I say, for inspiration, you need to look no further.  There is a hero among us.  A young lady who shows she is strong enough, good enough, and well enough to take on this thing called diabetes.  Every child, and in fact many adults too, should hang this picture in an obvious place to remind all of us that when it comes to dealing with diabetes, YOU CAN DO IT.  We Can Do It! Like Avery, we are DIASTRONG!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Photo with permission and created by Carleigh Alvery at Ember & Ash Photography.

If Only Biology was a Device

I have often wished that that ‘biological’ make-up of our kids living with diabetes were the same make-up of a diabetes management device. My daughter was one of the first kids wearing an insulin pump on Long Island. Hard to think that the original proto-type for an insulin pump looked like the one in the picture. Imagine walking around with that thing on?

BUT………

……..once someone engineered the workings, the world of device research could take their shot at making it faster, smaller, quicker. And once THAT was done they could connect to other devices to dispense insulin. It was easy to do that because the device was there. The world just had to make that device better, and they did. As with the insulin pump, so many other devices and companies sunk everything they had into making ‘their device’ the best one out there.

And each step of the way since the day insulin was discovered, less than 100 years ago, the headlines all touted ‘The closest thing to a cure for diabetes.’ Uhhhhhmmm…..no.
It seems devices get the good press while that all elusive biological research continued ,but too slow to our liking .

Years ago, I sat in a meeting where the conventional world stated that the transfer of islet producing cells from one individual to another would never work………but here’s the thing…….it did work. But the same nay-sayers said that well sure, but they are on immunosupressive drugs. But the truth is that each person in those clinical trials suffered from sever hypoglycemic unawareness. They could not hold a job, drive a car, and in essence their quality of life was severely impaired. So those who ‘were in the know’ kept force-feeding the world that the immunosupression drugs was a deal-breaker and abandoned hope and told the world they should abandon that idea as well..

Well not everyone and thank God, not everyone.

For the largest amount of those in the trials (some have been off insulin for over ten years) even those that ended back on small doses of insulin or completely back on insulin altogether, their quality of life changed forever as their hypoglycemic unawareness was no more. But I’m not touting that the cure is here, it is not.

But I have a question, what if someone stated way back when; “well that insulin pump is just too big, forget it?” They didn’t. They kept at it.

And we have to make sure that the world of biological research continues to ‘work at it’. Now across the world various many Researchers are working on figuring out a way to implement these biologically produced cells in the right place in the body, protect them, sustain them, and have enough to go around. Now many people think that ‘big pharma’ will do everything to prevent this from happening. I don’t think so, but let’s say for a second that the belief is true, do we just say okay and walk away?

If there is one thing I know about this wonderful diabetes community, is that we never walked away from a fight. Whoever and wherever you choose to support is ALL YOUR CHOICE…….but if we know what works but has hurdles, why would we not demand that as much money as possible be spent to eliminate these hurdles?

“Re” — “Search”—to look again.
And again, and again, and again until we get there.
Biologically?—just like the backpack insulin of yesteryear—–it needs to be improved, but not abandoned. In fact all steps surrounding this research should be ramped up if you ask me. We need more looking into this area, and all surrounding ideas.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

PLEASE Learn this Phrase: “Ask Your Medical Team.”

Whether you have been in this diabetes world for a day or ninety years, the things you have gone through have created volumes of incredible and useful knowledge. Much of that experience can help others, but we also ALWAYS and in ALL WAYS must remember that it very well may be that it is only relative to our own experience.

Once again, I read where someone came on line who had reversed the necessary doses of insulin for their child. I was amazed at the lack of times, those who had suggestions, that did not begin their statements with; “This is what we do, but call someone on your medical team first.”

THAT is the ONLY ACCEPTABLE discussion to have. If you get annoyed at me for saying that, well that’s fine. This is not my opinion. We, all of us; ‘WE’ ARE NOT DOCTORS or trained enough to give medical advice. There are many medical professionals on our team who have both years of education and experience that we pay for; for a reason. This is not about an experience where one of us proved our medical team wrong on a particular isolated incident; true, no one knows our children better than we do. So there are always times our medical team will say something, and we will discuss the point. Many, if not most, of those times our medical team will listen and a correct course of action will be charted.

But please remember that should you seek people’s opinions on what they did for their child regrading their diabetes, whatever opinion they suggest, know this—-IT IS JUST AN OPINION based on their individual experiences.

I shutter to think that a newly diagnosed mom will one day go online and seeks advice and someone suggest something not knowing ANYTHING else about the situation and the advice is wrong because there is something else going on that is not known. The results could be catastrophic.

Social media is hugely powerful and helpful Very simple rule to ALWAYS remember; whether you give or seek advice know that first thought, comment, or course of action should always be, ‘……ask your medical team first.

Of course your experiences can be HUGELY helpful. Your insight HUGELY needed. But a medical team must always be involved.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.