A Young Man Who LIVES: Diabetes Just Won’t Do in HIS Life

Ryan Reed JoslinHave you ever come across something that just says, “WOW!!!!! They got this right?”  As is so clearly known, I’m staff at the Diabetes Research Institute Foundation and I have to admit that I would be lying if I said I was not a tad envious of my friends over at the American Diabetes Association and their relationship with Lilly Diabetes on bringing NASCAR Driver Ryan Reed around the country…..and to that I must say, Bravo, Bravo, Bravo.

The absolute truth on the success of this program; American Diabetes Association, Drive to Stop Diabetes is not merely the concept of a NASCAR Driver with diabetes visiting kids around the country, but it is actually Mr. Reed himself.

This young man must have had an incredible upbringing because to balance confidence with humility is no easy feat and it is the first thing that strikes you about him when you meet him.  The feeling he has in his heart for kids with diabetes is evident as soon as he opens his mouth to speak.  Maybe because he understands what they feel when being diagnosed with T1 diabetes and told your dream is gone.
Ryan ReedHe told me that he has always loved the ‘need for speed’, as so many in his field.  It is important to make note of that fact because it is what he loves, and always has.  Speed.  More.    As Gary Hall was to swimming, Ryan Reed was to racing; both could not breathe unless they were doing what they loved.

And in 2011 Mr. Reed was told, as Mr. Hall was told many years before; that being diagnosed with T1 diabetes meant an end to their careers.  And both of these athletes made it clear, diabetes would just not do in their lives.  “No” was not an option.

Mr. Reed, at the ripe old age of 20, is one of the youngest members on the NASCAR Circuit—and he is doing it with type 1 diabetes.  His pursuit of fulfilling his dream has served as an inspiration to anyone who hears him; and I have quite a few times already.

And yet, it is not just what happens on the track that is impressive, look at the faces of the kids he is with in the picture above. His recent visit to the Joslin Diabetes Center was filled with kids who marveled at his diabetes on the racetrack and listened attentively to his day-to-day dealings with the same thing they must; T1 diabetes.

His message was clear, diabetes stopped him from nothing; and it should not stop their dreams either.

They say that the first rule in racing is that what’s behind you does not count.  And surely Mr. Reed is focused on his goals in front of him.  Gary Hall once told me that he won more medals in the Olympics after being diagnosed with diabetes than before.  I look forward to the day that Ryan Reed tells of all the things he has done when told that it never would be possible after his diagnosis…….and that list has already begun to lengthen.

Drive open in the corner my friend, until you see God,……….and then pass Him!!!!!  The checkered flag, to Ryan Reed, is not merely on the track……..it is the goals he puts in the hearts of every child who hears his voice.   To reach those goals, one begins by starting the engine.  And when it comes to diabetes, ‘Drivers, start your engines’.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Jeopardy Answer #19 for D-Month: When it Comes to Advocacy at Schools, One Mom Stands Alone in Her Efforts…..

Crystal Jackson…….and the answer is, who is Crystal Jackson.

Clearly Crystal is part of a great team effort at the American Diabetes Association’s constant battles to protect the rights of people with diabetes in the work place, at school and in many other arenas.  As a mom to a child with T1, Crystal’s efforts are monumental to make sure that no injustice is left behind and she works tirelessly at it.  This soft-spoken mom is a lion in her efforts and she is THE authority to all of us parents who seek information about school-place injustices and procedures.

She not only ‘does her job’ but will lecture/help advocate from large auditoriums of people down to a one-on-one conversation to help solve the problem.  It is clear to many people who, when you say 504 plan, Crystal Jackson’s face appears in your mind.  When you say ‘checking blood sugar or glucagon in schools’; Crystal’s face appears again.  If there was an injustice at any school in the nation need resolution, you can bet that Crystal Jackson was part of the answer.

To be clear, she is the first one to say that it is a team effort from individuals who step-up to her colleagues at the ADA; and no one would argue that point as the ADA houses lawyers and advocates for the disabled across the board in a concentrated unified effort to help those in need; but in the diabetes community when a parent asks for help, the name Crystal Jackson is the name given.

Her Bio from the ADA:
Manager of Legal Advocacy at the American Diabetes Association’s National Office in Alexandria, Virginia, and a parent of a child with diabetes. Crystal, a former litigation paralegal, is a long-time ADA volunteer and joined ADA’s legal advocacy staff in 1999 after she successfully lobbied the Virginia General Assembly for the passage of school diabetes care legislation that has resulted in improved standards of care for students with diabetes. Advocating on behalf of her daughter, Crystal achieved a model OCR resolution agreement for the care of student’s with diabetes in the Loudoun County (VA) School District.

Crystal has contributed to many diabetes publications including the National Diabetes Education Program’s school guide

Helping the Student with Diabetes Succeed: A Guide for School Personnel and is a frequent guest speaker at nationwide family diabetes conferences and camps. Crystal is a member the Virginia Diabetes Council.

For Diabetes Awareness Month:
This month, I will be highlighting someone in the diabetes community.  They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place.   I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are.  If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well.  Welcome to diabetes awareness month.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.


Diabetes Should Not Even Entered the Argument…..Something YOU SHOULD Know About.

Scales tipped wrongMany times I have stated that any one person can make a difference if they choose to make a difference.  If you have not been following what has been happening in California, you should find out.

Yesterday, the California Supreme Court heard oral arguments in the American Nurses Association (ANA) v. Tom Torlakson as Superintendent of Public Instruction, a case that disputes the legality of non-medical professionals administering insulin to children with diabetes in a school setting.

The two arguments (in my very simple terms, my apologies to the judicial system): ANA states that only a nurse can administer insulin in the schools vs. others being allowed to administer insulin. 

What I find interesting here is that it took seven years to get to California’s highest court.  Appeals, litigation, and seven years later the Supreme Court has to rule in 90 days on its findings based on the arguments.

Perhaps it’s me, but there just MUST COME A TIME that common sense prevails in cases such as these.  When it is so very clear of a child’s welfare being compromised, there is something wrong.  When the average ratio in the state is 1 nurse per 2200 students; there is something wrong there as well.

And it is THAT point that also MUST be considered.

In as much as the lawsuits seem ridiculously simple to solve, the bigger question the Union is asking is the real problem of the school district: Are there enough nurses, and what to do about it?

Unfortunately they may have a valid point.  But they missed on the approach and at the expense of those kids with diabetes; and that’s not good.

If you want Rocky Road Ice Cream; you have to ask for Rocky Road Ice Cream.

The real error here is that the plight of those with diabetes is being argued to make a bigger point and to fight a bigger argument. 

When I read these comments:
Justice Joyce Kennard: “If kids can self-administer, if parents can help administer the insulin shot, what amount of scientific knowledge is applicable?”
Justice Carol Corrigan:  “If I’m a parent of a first grader and there are no school nurses … either we have to hope little Billy knows how to inject himself or I have to rush home from work, is that how it works?”

My hunch is that the arguments made by the ANA are losing footing very quickly in the minds of these Justices.  And that is too bad because they may very well have a point that something needs to be done to change that 1 nurse per 2200 students.  I, for one, do not know what should/can work in this scenario.  I do not know what it should be, but THAT argument was not the argument and I do believe it should have been; and in a different scenario, it still may.

But someone at the ANA either underestimated the power of the American Diabetes Association’s ability to make the correct argument or they didn’t think it all the way through that the ‘issue at hand’ was too detrimental to our kids to be used for the bigger point they are making, or wanted to make.

It’s too bad because they may have a good and valid point.  But after seven years of going through the legal system, finally, we can only hope that the courts’ wisdom will prevail and a better system of administering insulin to the children who have enough on their plate dealing with type 1 diabetes every day, will no longer have to worry who can, and will, administer insulin when needed .

It very well may be that it turns out in our favor, that will be a good thing and thank you to all who fought the good fight for the last seven years. 

Special kudos to the American Diabetes Association.  If you ever wanted to see an organization in action, this was the ADA doing what they do better than ANY other group out there; fighting for the rights of people with diabetes—BRAVO ADA.

But the fact will remain that 1 nurse per 2200 students will stay the same—-and that should have been the argument of the ANA to begin with; now we don’t know if that ratio is okay to continue; and we very well may never know.  And that is not good.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Needs a New Name Change????……..Ummm…….More than That!!!!

T1 DiabeticLet me start off by saying this is NOT AN ARTICLE on what to do with the name of diabetes.  I was just looking at some of those posts and I happen to cut away and started reading an article about one of the rookies trying out for the Baltimore Ravens Football team who has T1 diabetes.

In the article the writer calls type 1 a rare disease.  It hit me as weird.  Rare?  I guess being involved in the diabetes world for as long, and as much, as we have been, I just never used the word ‘rare’ to describe what my kids have.

Quick answer:  How many people have T1 diabetes in the United States?  Do you know?  Me either so I started trying to find out.  And it is THIS point that leads to my headline.

Now there were a whole lot of people who had something to say about what the name of T1 diabetes should be, should not be, and/or what to do about it and that reading showed a fabulous passion on all sides of the fence.   Those who know me know that I love passion.  It stimulates discussion and education when directed correctly.  That fabulous line from Field of Dreams when James Earl Jones’ character says; “I wish I had your passion Ray, ………..misdirected though it may be………it is still a passion”, is one of my favorite lines.

And perhaps we should ‘tap into’ that passion to help fix a really big problem.

It seems to me that there are many things wrong with the perception, reporting, and simple facts about T1 Diabetes.  More than just the question; “Should one be called a person with diabetes or a diabetic?”  From my homework, the best ‘educated’ (notice the quotes) guess is that there are between 1-1.5 million people with diabetes, with some places saying 2 million.

The American Cancer Society states that around 232,340 women will be diagnosed with breast cancer in 2013.  Seriously 232,340 people and there are anywhere from 1-2 million people with T1 Diabetes?  Seems to me there is a SERIOUS reporting problem that one disease estimate could be that defined; and we do not even know how many people actually have T1….don’t you agree?

Thankfully the T1D Exchange is working real hard to capture numbers to share information but so far, only 26,000 are part of that registry.  “Only” is a relative term because THAT IN ITSELF was a monumental job to capture I’m sure.

Try to find an exact number; even to ALL of diabetes, seriously—look at those numbers; the American Diabetes Association states that 7.0 million people do not know they have it (which I imagine is T2); seems more people do not know they have it than we know more exactly how many have type 1……..am I the only one who finds this a bit disconcerting? (AND TO BE VERY CLEAR: I am in NO WAY stating that the ADA or any other organization is at fault for the statistics they show on their website.  This is problem is so much more than stating facts as they are made known; this is a much bigger problem on collecting proper data for others to distribute.—-I just wanted to be clear about this point.)

If those who keep national statistics do not find it important enough to obtain more exactly those afflicted with T1 Diabetes; if reports do not know more exactly who has suffered and even died from T1 Diabetes; if T1 diabetes and complications statistics are kept so loosely that no matter how hard you ‘google’ or ‘yahoo search’ you cannot find answers: how can we blame media and others for ‘getting it so wrong’?

Let me ask another question:  In your heart do you think that there are more than 1-1.5 million people with T1 Diabetes in this country? 

I’m not sure either……..seems though someone should be more diligent in finding out…….yes?

I am a diabetes dad

Please visit my Diabetes Dad FB Page and hit ‘like’.

$116,000,000,000 You Pay….What Comes Back?

moneyThe American Diabetes Association estimates that when it comes to diabetes 116 billion dollars (with a “b”) is spent on everything out of lost time which is an additional 58 billion dollars.

I believe there will be a solid advantage to the pharma world that is aligned with the place and/or organization that takes us closer to a cure, or is helping those in need on a larger scale–a thought occurred to me that I think needs addressing.

If you combined all—I mean all—of the money given to those focusing on research, you would come nowhere near the 300 million dollar mark annually.  That’s JDRF, DRI, ADA, Joslin, Barbara Davis, DECA, Columbia University, Minnesota, Harvard, and on and on and on; COMBINED. I believe my number of 300 million is very high for an annual amount.

For all that is given, spent, and utilized to care for all those with diabetes; all the fundraising combined is .25 of the total revenue spent on diabetes care annually; and almost all of that fund-raising is private philanthropy;  one-quarter of one percent!

Anyone else find that number to be slightly skewed? 

I get it.  Companies are in business to make a profit for their stock holders.  And many companies give a good deal; but are all of them giving even 1% back to the consumer in the form of a cure or helping those in need?

We now have many choices when it comes to diabetes supplies, maybe we should add,  “What are you doing to help?” to our decision process when choosing a company to purchase our supplies.  Maybe we should be asking more, what do you think? 

I am a diabetes dad.