Lisa Awards 2019, Powerhouses in Our Diabetes World and One Special Son

Ten years are a long time.  I just cannot believe that ten years have gone by that our sweet Lisa left this world.  But she went out with a voice shouting from the mountaintops and it is in the memory of that voice that I keep the promise I gave to my Little Brother (honorary), Mark, that in honor of his wife I would bestow The Lisa Award each year to those who understand The Power of One.

It is 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 award 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 facing trials hit them ‘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.

This year’s recipients are:
 
Aaron Kowalski, Ph.D. — CEO, JDRF — A 15-year veteran of JDRF and the first person living with T1D to lead the research organization, Dr. Kowalski has a strong record of spearheading impactful strategic initiatives and forging new partnerships from his previous role as JDRF’s first Chief Mission Officer.  But Dr. Kowalski is not a recipient of The Lisa Award just for his new role as JDRF CEO, it is because of his unyielding desire believing that good, is not good enough.  No matter where you look; running, riding, testifying, lecturing, one-on-one conversations and/or leading, he is a true living example of how important this Power of One truly is, he lives it.  Make no mistake, he will credit those he works with before taking credit himself, which only makes him even more deserving of this award.  When it comes to true diabetes advocacy and understanding what this world needs to become for a better world for himself, his younger brother, and the rest of the world living with this disease,
Dr. Kowalski is the absolute “Real Deal”.   I have had the pleasure and privilege to be side-by-side presenting with Dr. Kowalski and working with him in other dealings, and his brilliance is only outdone by his compassion to making a huge and true difference in this world of diabetes.  Great things lay ahead.  Power of one; indeed.


Kim May — President/Founder Nobox Creative — or perhaps she should better be known as supermom.  In addition to being the owner of a hugely successful Ad Agency in Amarillo Texas, Kim has never forgotten the day that she laid her almost lifeless son, at the age of four and with a blood sugar of over 1000, on a hospital gurney stating for the staff to get to work on saving her son from a newly diagnosis of type 1 diabetes.  Already a powerhouse in the community, she co-created GetDiabetesRight.org, a site dedicated to allowing people to download creative posters to be used for diabetes awareness within their communities on the warning signs of diabetes and what to do when these signs become evident.  Hundreds of thousands of posters have already been downloaded and distributed  Not nearly done with her efforts, Her Power of One continues as one of the founding and continuing Board Members of the Diabetes Foundation of Higher Plains in Texas which runs a camp each summer and also funds diabetes research.  She and her husband, Jentry, are hugely dedicated to their family and her two sons’ MANY activities, as well as the community they live.  Kim has left her mark on everything from museums, to churches, to Amarillo and Connect Magazine, to so many things diabetes.  Her Power of One is unyielding although she too, would be the first to say, she has a lot of help.

Matthew Carlinsky — Lisa and Mark’s Son.  As soon as I knew that Matthew would be one of the Lisa Award recipients this year, I wondered how far I would get before i completely lost it and the tears would flow.  For the record, the tears started before I finished typing his name.  And I’m sure they will continue, so I will just keep going.
The main reason for the tears is that Mark’s upbringing of Matthew and the fine young man Matthew is turning out to be is EXACTLY as Lisa would have wanted it.  Mark is not easy, he has always demanded striving for the best, mostly in himself.  To be able to do that in also a loving way to a son, and as a single parent is no easy task,  But right back at him, Matthew is no lightweight either. They surely bring out the best in each other. At the age of four, Matthew was dealt a blow that no child should ever have been given.  He lost his mom.  There is no doubt that Mark has kept Lisa’s memory deeply arrive in Matthew and it is what Matthew has done with it that, he too, is being awarded a Lisa Award.  It’s important that one remembers how important this award means to me, and remember what I have stated in the past, I do not give it lightly.  Matthew has not only accepted his Mom’s Power of One, he has come to own it.  As it was important for him to be helped by The Family Lives on Foundation, Matthew knew that in his Mother’s memory and teachings, it was time to give back, even at his young age, and give back he does.  Through the organizations “Traditions Program” kids get to relive an activity or tradition that was special to their parent.  For Matthew and Lisa it was Holiday and Birthday baking.  Cookies and cupcakes.  Matthew states that, “The Traditions program definitely helped me cope with the loss.”  But more than that and realizing that his Power of One could make a difference, Matthew turned all of this into a month long awareness and fund raising effort.  Being a member of his Oyster Bay High School’s National Junior Honor Society (which I’m sure mom smiles down upon as well), Matthew enlisted the help of his fellow students to raise the highest amount of money the high school chapter has raised in 17 years.  (Side note under the full circle ‘small world’ title, My wife, Jill, was a graduate of the same high school).  In the picture above, gone is the little boy sitting in his mom’s lap replaced by a strong young man and the photo shows Matthew addressing the crowd at the Foundation’s Annual Ball in Pennsylvania thanking them for recognizing his efforts.  He pledged to continue assisting Long Island Families involved with the Traditions Program.  Even as a ninth grader, Matthew is an absolute living legacy to his mom who believed that One Person can make a difference no matter where they are, or where they go, or what they do.

Congratulations to this year’s recipients.

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

 

 

The Journey is the Destination…Do We REALLY Fail?

Screw FailureI’m speaking to a friend who shares with me ‘how hard’ they are working (with their child) so that the next visit to the doctor they will have a different A1C.  “It’s so hard and we are doing everything we can. But the sacrifice will be worth it.”  Another friend struggling so hard to lose weight (which I am VERY familiar), “I really need to look better and am working so HARD to get there.” And still another friend on, “It’s my only goal to get out of this job.”

Then what?

I have often wondered what happens when someone reaches their goal when a particular goal takes up ALL of their time and energy.  As I watched the Olympics, I was struck by the comments on those who were in the Olympics in 2012 and failed to medal, and ‘…..came back to reach their goal….’

“Failed to medal”?  Wow.

So if you medal, you succeed, and if you do not; you failed.  Your body has become the most incredible specimen on earth and you are in the top .0001 % in your particular sport compared to the rest of the world’s population but if you do not medal, you failed.. And what about those who win.  They get their medal.  Then what?

When I left the acting world, after Kaitlyn’s diagnosis, you would be surprised on how many people asked me if I was sad I did not ‘make it’ as an actor?  Make it?  According to whom?  Awards?  Won a few, nominated for a few.  Money?  Made some.  Not tons. Interesting that I qualify for a pension when I retire from Actor’s Equity, not a lot; but more than about 90% who will not get any.  And I have worked with some REALLY GREAT projects over the years with the most talented people on earth.  Did I really not make it?

You see I learned a long time ago that the goals I reach for are every day.  Some goals with a stretch to keep me growing but it’s the daily goals that are the most important and here’s the thing; they’re my goals.  Not by the standards of others.  My goals.
When it came to our kids’ diabetes, same thing.  Our goals.

I did not compare to other people’s stories.  We did not live by numbers, for numbers, and against numbers for any other reason but close control mean feeling better.  Trying to stay away from ‘swings’ were for the only reason to feel better.  Success, and some better days than others.  We learned and we moved on.  But the goal was to try our best each day.  Because if you try your best each day, your goal is set and evaluated by working toward your best, and observing the perfect things already in your life.

A child’s smile.  A touch.  A gesture.  A good deed.  Being with the people around us. You know many….many loved ones are not with us anymore….would they not think that just having the ability of one more day a HUGE SUCCESS?   Many times when I travel, if I am at a restaurant I surely cannot take the ‘leftovers’ back with me to my room.  I ask for a box and pack up what I did not eat.  When I leave, I leave the box by a homeless person, and walk away.  It makes me feel really good.  What was the effort?  Zero.  Do something for someone….smile on face, goal reached.

My point is that the world is harsh on how we look, what we do, what we don’t do; but yet how much does the world give us to succeed?………so why let the world dictate on whether or not we are successful. How much are you succeeding at that is going right by you.   Set a goal today, small as it may be.  And go for it.  Notice the goals you do reach.   The majority of us do not have that ‘drive’ to become a Professional or an Olympian and I applaud those who do.   But honestly, I would rather work toward something each and every day that I CAN achieve than to lay it all on the line to have ‘failed’ and need to try for another fours year to ‘try again’.

I’ll take a lot of little reached goals reached daily thank you, and will try tomorrow again. A lot of ‘littles’ make a life.  Think about it.

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

 

When Did Insulin Enter the Oil Market? Rising Costs Seems that Way.

insulin oil wellHave you ever seen a story in the news about the rising cost of oil prices?  Usually a photo of men hovering together as if to show that they control the price per barrel and the rest of the world can only watch and wait…..and bear the brunt of whatever decision is made.  You’ve seen it, right?

The cry came forward from administration to administration how we had to be less reliant of foreign control of oil prices.  It impacts us all.  It’s a scary thought when we are confronted with the fact that a few are making a decision impacting many.   Because of this impact, it garners the attention of the news media.

When it comes to diabetes, there has been stories lately that seem to be missed by many and is becoming an increasingly worry-some fact.  The cost of insulin has been on the rise.  It’s been on the rise for some time.  In a Los Angeles Times article by David Lazarus almost a year ago he quotes Dr. Mayer Davidson, “…..Davidson cited a recent paper in the Journal of the American Medical Assn. showing that prices of both generic and patented insulins have jumped more than 500% since 2001. The cost of a vial of one of the most commonly used fast-acting insulins, Humalog, soared to $234 this year from $35 in 2001, the journal said….” (9/4 2015 LA Times)

What? And who do you think pays this?  Answer, us.

It’s not as if there is a shortage.  The American Diabetes Association states on their webpage; “ All insulin available in the United States is manufactured in a laboratory, but animal insulin can still be imported for personal use.” (Cite: Click Insulin Basics).

Now to me, I take it that there should be a fairly limitless supply as long as the manufacturing equipment has the materials needed.  I’m pretty sure they do. So if there is enough to make what is needed, why the rise in cost?

This rise in insulin cost, to me, is just because a few companies control the substance that keeps people alive.  They can dictate the prices because it’s not as if there are a million brands that would keep the consumer cost to a minimum, so much for consumer choice.  It’s because you have a choice of only a few.  Demand dictates cost.  With over 29 million people with diabetes and millions of those on insulin with only a few choices…….well that equals what we are now facing.  Glut. Greed. Money. Costs escalating.

But when people are prolonging their insulin doses by cutting back on what they feel ‘they absolutely need to have’ due to high costs, as oppose to what the doctor, recommends, and what the patient knows they need; ladies and gentlemen—-this is a real problem.  This could cost lives.

Keep your eyes open on this topic.  When you see advocates asking for actions, act. Join dPac today. If you have diabetes or a loved one with diabetes, this is site you might want to follow as they do an incredible job on ‘acting’ in all fields of diabetes. DPAC was co-founded and is run by patients with diabetes: Bennet Dunlap and Christel Marchand Aprigliano. Joined by other diabetes patient advocates the Diabetes Patient Advocacy Coalition (DPAC) is an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC seeks to ensure the safety and quality of medications, devices, and services; and access to care for all 29 million Americans with diabetes.

Insulin is not oil.  It would be a shame if these costs are controlled in a board room.  I fully understand free enterprise….but when a ‘controlled market’ of people are paying too high a cost to JUST stay alive…..someone needs to step in.  People will die.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

YOUR LAST CHANCE IS TODAY—-Do You REALLY Care About Those who Died?????

voice mattersOkay, I admit that the title was a bit much…..but so many who should be involved in this have yet to do so.  AND THIS IS SO IMPORTANT. Remember your anger reading about the so many who have died, or became seriously ill, because their diagnosis of T1D was missed?  Kycie, Little Reegan, and so many more…..remember?  How angry are you?  Angry enough to do something?

For the first time, there is an attempt to capture as much information and data as possible regarding this issue and YOU CAN HELP.  This is YOUR LAST CHANCE to be part of history because tomorrow……the survey is done.  Today is the last full day.

Because of the requirements of his survey….you must become a member of Glu. It is a great site asking great questions all the time…..you can choose to be part for as much or as little as you want; and for as long as you want, but to give this survey credibility, it is required by the ones who gave it an IRB Approval. (Institutional Review Board).

Go to www.myglu.org.  I purposely do not have a direct link from here to their site because if there is a link through ‘my cookies of my computer’ the survey will not be available because I took it already.

Once a member, go to the right side and click ‘My Diagnosis Story” and take the survey. It is there that you can share your story.  We REALLY NEED as many parents as possible so please consider it.

The name I gave this movement years ago was a Child’s Cry for Change…..please help those voices be heard……take the survey today.  Be counted.  Thank you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Hey, Moms of Kids with Diabetes—Olympic Moms have nothing Over You…..Take a Bow.

Olympic Rings MomsOlympic parents.  Specifically Olympic moms.  Ever see them in the stands?  Close-up, upon close-up, of the moms who know everything their child sacrificed and diligently worked at to be in the Olympics.  Proctor and Gamble even did a commercial about Olympic moms.

Yeah, so what.

Actually I don’t mean to belittle those moms and in fact I have great respect for them, But I also am very aware of a different kind of mom.  Moms who go through life with the same hope, the same expectancy, the same anxiety, the same disappointment, the same joy, and the same drive for gold…….but there is no camera showing a national audience the faces of these moms…..in fact there is not even a gold medal awaiting their child…….nit even a bronze….because these moms are dealing with diabetes in the privacy of their own lives, and not in a national spotlight whatsoever.

But make no mistake about it……those facial expressions that you see on TV with those Olympic moms are just as present on these special moms, and are there every day because moms of kids with diabetes are just as diligent, just as involved, just as hoping-for-the-best as any mom of any athlete competing in Rio.

And that’s you (yes, I know—-there are dads too).  So to all of those kids out there living with diabetes, this is to your moms who help their kids strive for gold every day in their own lives.  The gold of getting EVERYTHING life has to offer.  Moms do that.  Your mom does that.  So moms, Imagine your picture within the rings of the picture I included, these are but a handful of moms; but we know that you could fill the entire city of Rio, if you wanted.  Without fanfare, without spotlights, without commercials about what you do…..but just because you are you……you are, indeed, gold.

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

Dear CWD FFL…….Thank You for Saving My Children’s Lives

CWD FaceDear Children with Diabetes Friends for Life,

It’s been 17 years since we started together.  Wow!  Where did the time go?
I don’t know if I’ve ever said this to you before, so I’m sorry it took so long.
Thank you for saving the life of my first child, and also for saving the life of my second child upon diagnosis of this dreaded disease.

After 17 years I looked around this year’s event in Orlando last week and reflected on how fortunate I have been to be here, since day one.  To many, I guess, I’m a CWD FFL insider when in truth, I’m just a CWD Dad.  I volunteer here, and there…….. as so many others do.  None of us are your favorites but what we are is YOUR ARMY of volunteers because in the beginning people were there for us — we must now be there for others. If you are now involved, you should get involved to pass it on also.

You’re not a huge organization with a huge infrastructure……no…..you are a group of people, friends for life in fact, who believe in just plain ‘ol helping. Helping because a two-year old has been diagnose and there is nowhere to turn.  Helping because we are up at 2 am and we don’t have to explain it to you.  After years of turmoil and doubt, coming here we did something we had not done in a long time, we laughed.  That happens when people are comfortable with each other, they laugh.   That happens here.

There were so many sponsors present……but not all….not enough.   It bothered me that Medtronic was not there this year.  Not sure why, its none of my business really, I’m just a volunteer.  But when my daughter went on their pump in 1999, I guess families mattered back then.  I guess they don’t anymore.  I’m sure it bothered you also, and I’m so sorry that it’s such a struggle for you all who plan and coordinate this incredible event all year-long.

You should not have to struggle to get companies involved.  People in our world are VERY LOYAL.  Friends for Life also means clients, patients, and customers ‘for life’….and they should think about that a little bit.  You should not have to seek out companies, they should seek you out to learn how to participate.

When my daughter was a very young age, we learned that education was the equalizer to battling this disease.  We learned to do all we could to ‘own it’ so it would not own us. We were taught.  We listened.  And in-between all of the sessions of knowledge and the updates of research; we laughed.  We talked.  We grew to love people who needed no explanation when we had to do ‘something diabetes’…….they knew.

And after 17 years, I have watched so many children thrive in the world around them. Mine included……because of you.  Us parents learned a thing or two also.

We have been taught and taught well.  No easy feat.  In fact, an impossible feat if one dare to sit down and actually figure out how it all comes together.  But it does.  There is only one explanation that can probably explain it.  Sponsors who care, volunteers who care, families who care and all who dare to dream of learning together….because good friends do that, but those who do it to save the life of a friend’s child are more than just good friends………we are friends for life.
Thanks again.

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