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

Do You Ask Yourself?

I have recently started to ask a question at a seemingly ridiculous time. Did diabetes play a role? Someone passes away…..did diabetes play a role? When someone calls and is arriving late……did diabetes play a role? A person is breaking up with tehir partner……did diabetes play a role?

Parents Lose a Child……Do More, Why Don’t We?

I have often stated the phrase, Just Don’t Do Nothing. It is pretty straight forward and self explanatory. We, as parents of children with T1D, should not be waiting for someone else to do the heavy lifting when it comes to anything diabetes related. Advocacy, fundraising, helping others the question remains if not us, than who?

Here is another factor to add that, if anything, should probably guilt us into action, some action, any action. In my many years in this battle, I have lost count of how many families lost a child due to T1D. Whether it was dead-in-bed-syndrome, or they went hypoglycemic as they slept and passed, or just went into a glycemic reaction and did not make it, families have suffered the devastating and incomprehensible loss and you know what they did, they threw themselves into a diabetes cause. Fund raising, support, advocacy, and/or something else helping those of us who have no idea of that immeasurable pain.

Again, The Lisa Awards–Very Special People

It is now in year 13 that my dear friend and wife of my Little Brother (from another mother but just as close as a real brother) Mark, has left this world.  Lisa was a one-of-a-kind woman who proved to the world that one person, just one, is all it takes to change the world; the Power of One.  In memory of that voice that changed the world, I made a promise that I would give Lisa Awards each year to deserving individuals that understand the Power of One.

It’s given to people who, in their own way, change the world just like Lisa did.  This is a VERY BIG deal to me because these awards are not given lightly.  They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day.  My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would, or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards. She was diagnosed with cancer.  Lisa and Mark shared their writings of her journey, in real-time, with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others now facing trials hit those trial ‘head on’, inspired by this young couple.

Eventually, what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever ‘it’ is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

Also, just over two years ago, I lost one of the most influential people in not only my world, but the diabetes world as well, and a dear, dear friend.  Paula Ford-Martin is the reason I have the mantra Diabetes-Dad.  She was a writer, editor, and all-around genius-with-the-word whether in print or broadcast media.  She was a book author, a blogger, and to me; is the main reason the dLife TV show on CNBC was as good as it was.  Paula passed just over two years ago in the same battle Lisa had, and she also is the only one who I bestowed the Lisa Award to twice because she not only understood the meaning of the Power of One, she lived it as an open book right to her less breath to teach others, not only in her own illness, (www.livingwithstageIV.com), but in the real life of her own children’s transition, she became a voice to be heard in the LGBTQIA community as well.  This year, each recipient of the Lisa Award-Power of One is awarded to those who used the written (or/and spoken) word in making a difference; in honor of Paula as well.

My first Lisa Award this year is given to a young woman (pictured above) who when you see her ‘do her thing’, is as breathtaking as the Top Gun/Maverick movie I just saw very recently.  Katie Bone is 16 and has T1D.  Katie Bone is 5’2″ and 110 lbs. This week on American Ninja Warrior, it was just Katie, by herself and the Power of One, against the terror of the course in front of her.  The Albuquerque, New Mexico native not only beat it; she mastered it and she now moves on in the competition.  I gasped, I screamed, I yelled, and when she was done…….I cried.  An insulin pump attached to one arm, a CGM to her other arm and her absolutely uncompromised strength and determination.  She had a message for young people (which I find so wonderful coming from a sixteen-year-old) both with and without diabetes, “do what I do, I don’t need easy, I just need possible.”
Power of One, indeed, dear Katie, my new hero…..and many others too.

Like most people who make this list, the next recipient will tell you that it was much more than his Power of One that made any difference whatsoever.  He would be modest and he would also be wrong.   Because way back, when, before anyone else thought that stem cells would be as earth shattering and changing as they have become, it was Bernie Siegel, an attorney from Florida who felt that this powerful research tool, stem cells, would change the world.  They would need nurturing.  They would need protocols, They would need looking after.  As Founder and Chair of the World Stem Cell Summit Bernie and his colleagues have pioneered and promoted policy and advocacy in the field of stem cell and regenerative medicine from its earliest phases of research to present day potential.  All to drive their efforts to bring safe, effective, and healthy treatments and cures to patients worldwide.  The world is on board now, but before that, it was the Power of One person, and that person is Bernie Siegel.

Susan Fong immediately took to the climate and creative mastery of Pixar Studios.  Starting as a software developer, Susan was the type of person who loves art and math, which also came easy to her.  She came to the point where she crossed over to taking her loves and adding them to movie making.  In the past she has worked on Finding Nemo, The Good Dinosaur and Coco, but it was a little addition she added to the movie Turning Red that caught the attention of the diabetes world.  When Susan approached the artistic team to add an insulin pump to the arm of one of the characters, it was met with an out loud and definitive, ‘yes’.  But as is Pixar’s style, if it is in the film, it’s going to be correct.  This attention to detail allowed Susan to explain what it is like being a person with diabetes as she was diagnosed at age four.  They went through every step what it should look like on the characters, and why.  It did not take long for the diabetes community to see and react to the Pixar character.  For Susan, it was all in a day’s work but to us, it was the Power of One person to get the largest and most successful animation studio of all time to say, “why not?”  Nice job Susan……and thank you.

And that rounds out this incredible year of Lisa Award Recipients. Hard to believe that it’s 13 years since Lisa left us, and just over two years since Paula did. If there is one thing I have learned doing these awards each year, it’s just how magnificent people can be.  The Power of One, is Power enough………to change the world…….even if it’s just one person at a time.

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

Tagged DaddDad. dMomDiabetes

DIY Be Warned, Be Careful

Years and years ago, when the insulin pumps fist came on the market, is the first time I heard the initials, or phrase, DIY. Do It Yourself. Many people with certain skill sets have taken it upon themselves to work at problems facing their loved one utilizing diabetes management tools. CGMs, Insulin Pumps, Fitness watches, and even medications are being experimented with to better manage a loved one’s diabetes, in most cases type 1 diabetes.

Sone of these DIY attempts have turned into full fledged companies trying to solve a problem. Many of these attempts come with disclosures that what is being proposed has not passed the litmus of the FDA for approval of the technique, the attempt, or the medication. So the user assumes all risks that the DIY world offers.

Now I am 100% fine with people hacking into system to connect devices and people for the benefit of obtaining the up-to-the-minute issue being needed by a patient…….but as more and more of these type ideas make their way to the mainstream, the cautions that need to go with it are becoming less and less. This is most evident in the medications being taken. Some medications are not intended for people with type 1 diabetes and many have that fact printed all over the packaging. But still, because the meds are able to help with the body as it deals with insulin etc., some have figured ‘short cuts’ to help manage their T1D.

At the onset of these projects, the users self-medicates and monitors themselves as they become their own lab-rat to see how the medication can hold optimum impact. And sometimes it works. HERE IS THE CAUTIONARY TALE: The more it gets used and meets with some success, the less the ‘warnings’ accompanies the treatment. This is bad. Very Bad.

DIY can be very useful, my only purpose for today’s article is to remind everyone that no matter what you are doing or trying ‘off-label’ PLEASE make sure you know all the details and risks. Do your homework and ask a million questions. I have heard, in recent times, that going off label with meds that many seem to be doing more and more, almost cost 2 people their lives. There may be a thousand reasons why this happened and many excuses as to why anyone would even try this. If, and that is one big IF, you choose to DIY on things diabetes related—–PLEASE do your homework.

Then do your homework again before engaging. There should be no scenario you have not heard, or are not aware, so you know how to react should tings begin to go sideways.

Be careful, we need you around.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes dad,  diabetes inspiration

Dear US Senate—-Insulin–the fight of our lives

Take a look at the video below
For the sake of my 2 children and all of yours—-please share this PSA with both your US Senators and contact lists. Tell them this means giving our loved one’s life back. Please share.

Contact your US Senator, tell them to watch this video and tell them how much it means to you.

I am a DIabetesDad
www.Diabetesdad.org
Diabetes Dad on FB