Lighten up people!

Today I'm going to do something I've never done before here, I'm going to directly respond to comments I've read on Facebook regarding Tom Karlya aka the "Diabetes Dad."  I want to make it clear that I don't know Mr. Karlya, until today I have never had any direct interaction with him (although it's highly possibly one of us has responded to the other's post on one of the diabetes related Facebook pages), I have never talked with him on the phone, exchanged emails and (once again, until today) we were not friends on Facebook.

I've been reading his blog post for a while, as I do most of the diabetes related blogs written by other D-Parents. From his blogs I've learned he has two diabetic kids and he works as a vice-president at the Diabetic Research Institute, and that is literally ALL I know of him.

I woke up this morning to find a link to his blog from yesterday on my Facebook page, left there for me by one of my best friends.  Here's the link so you can read what he wrote in it's entirety.

http://diabetesdad.org/2013/03/04/this-could-be-it-what-we-have-been-waiting-for-since-diagnosis/

While he doesn't say exactly what the "big news" is he is obviously very excited. He is very careful to point out it still a work in progress writing,

"It has some steps to go, and of that we will be clear. Some of the many components will be in clinical (human) trials within the next 12 months or so and some components are ever-changing. But conceptually, you will see, it is the most comprehensive plan and initiative that addresses each key piece of the puzzle that I have ever seen; and working together we will arrive at the end of what has sometimes seemed like a never-ending tunnel. It is real."

 

Luckily, I read this a day late so I was able to immediately go to his blog post for today and see what all the hoopla was about.  Here's the link:

 

 

http://diabetesdad.org/2013/03/05/the-link-is-live/

 

No real information but a link taking us to a video but not before he writes:

 

"As I stated, there is more work to do but this, to me, is clearly the biggest step that I have seen in my twenty years at being part of the diabetes community. The video on the site states it all and we are so excited on the possibilities that lay before us."

 

Once again he's QUITE CLEAR that this is still a work in progress. I eagerly clicked on the link and watched the this video explaining the DRI's recent progress on a project they've named BioHub. Here's the link so you can watch the video:

 

http://www.diabetesresearch.org/biohub

 

About a minute into the video the tears started to flow and then the tears turned into sobs because even though what they're talking about isn't a cure, it is a HUGE breakthrough and can be a life saver to people like my daughter who - no matter how hard they try - are unable to manage their diabetes.  THIS COULD SAVE BRANDI!!!

 

I immediately sent a friend request to Mr. Karlya so I could keep up with any progress he might post on his page, then I sent him a message asking what I needed to do to get Brandi considered for the human clinical trial.  Just for the record...I have not had a response yet.

 

So, my work being done I laid down for a nap in preparation for work tonight.  When I woke up and checked into Facebook I was floored to see some people in the DOC (Diabetic Online Community) were crucifying Mr. Karlya. I read many - but not all - of the post, becoming more angry as I did That's when I knew I had to do something, write something telling my point of view.

 

What the hell people, what has this man done other than share some GREAT news on a new treatment that may help all of our children. When did we turn into a community that turns on one of it's own over some potentially great news just because it's not the CURE we want?  The thing I love most about the DOC is the love and support we all have for each other, so I was mortified by the things I read, up to and including a very nasty post by a person named Brie Jontry (yep, that's right..I'm naming names!) who is not only calling for Mr. Karlya's resignation from the DRI, but also suggesting he give his $202,000 a year salary from the DRI to it's research program to fund this amazing breakthrough instead of his "theatrics".

 

Shame on you Ms. Jontry. I'm sure (but of course have no proof) that Mr. Karlya gives a significant amount of his salary to diabetes research, most of us give every penny we can and then we bust our ass to fundraise too.  So Ms. Jontry, might I suggest that YOU lead by example and give all of YOUR salary towards research....that's right, PUT UP OR SHUT UP!  Don't even think about whining about how much money he makes either, he's the vice-president of the organization for heaven's sake...did you really think he made minimum wage?

 

Since when is it a crime for a D-Parent to be excited about a new treatment? When did it become a sin to share that information? Mr. Karlya NEVER said this was a cure...just that it was a step TOWARDS one.  I'm thankful he shared the information, I'm thankful for this potentially new treatment, I'm thankful for Mr. Karlya.

 

One last thing for those of you who don't personally know me.  I'm not an "ass-kisser" and I DON'T suck up to people...EVER!  I'm not writing this post hoping to get on Mr. Karlya or anyone at the DRI's good side hoping it will help get Brandi in the clinical trials. She will...or won't...be accepted based on the criteria for the trial.  She didn't meet the criteria for the islet cell transplant and she may very well not meet the criteria for the BioHub trial.  Either way I stand by what I write today.

 

And on a personal note...

 

Mr. Karlya, I appreciate your dedication to your children and the diabetic community. I don't know you, but I'd like us to become friends, not just Facebook friends, but "real" friends because you seem like a warm person who genuinely wants to help ALL our children!  You, Mr. Karlya are my type of people!