I have always stated that I am an open book. I write what I feel. I want to reiterate how excited I am about the news from the DRI. I think the promise is there and it is a real approach.
I also do not run from anything I say and I want to address some of the comments of yesterday’s article. As a good friend wrote to me last night; ‘…..there is that old saying in journalism “if someone reads it a certain way, that’s how it was written.”’
I take my responsibility very seriously when I write. My article yesterday was mine. One of the things that I love being at the DRI is that I am allowed to write what I feel. Most of my colleagues at the DRI did not even know about it until I posted it (and those that did see it was for fact checking only). I tell you that so you know that my post was not part of any marketing ploy; the DRI put out an information mailer last week, so there was surely no need for them to ask me to add to that attempt, and they did not. The article was from me. It was my excitement and I wanted the world to know that exciting news was coming, nothing more.
I’m more excited today than I was when I wrote yesterday’s article. If the concept of a mini-organ, a biohub, is not real to you or you feel that it is not new, as in anything I write, you are surely welcome to what you feel. If the hope the biohub brings is not shared by you, than I cannot change your mind. To me, it is the most exciting news I have heard since I started this journey.
If my excitement about this gave you leave to think that it was something it was not, it was surely not my attempt and I am sorry if taken that way. And I am; sorry. To have any parent think that the work was done and here, although stated clearly in a few places that more needed to be done, well, this I feel badly about, and surely was not my attempt. No one asked me to write this today, as yesterday; it is on my own.
I’ll state it again as my friend wrote last night “..if someone reads it a certain way, that’s how it was written…” and that resonated with me. This was my excitement and still is my excitement. So many people, after they saw the biohub, contacted me with excitement and hope in their voices. They are just as driven in this journey as anyone else and it was great to hear from the literally hundreds who saw the biohub and feel as so many others feel about the promise it will bring.
Again, my article had nothing to do with the strategy of the DRI in releasing the news on the biohub; if you agree or disagree on what I wrote it is with me alone; if you agree or disagree with what was posted about the biohub and have questions, the opportunity will be given to you in the near future to speak to the scientific director who heads this initiative.
But when all is said and done, I am out there and surely I can read what some people are saying; I had this vision last night of a young mom of a newly diagnosed child saying, “I really thought this meant it was here, now. And it isn’t.” No it isn’t here now but I believe it surely will be as I never have before. And for those who feel this was a misleading article due to my excitement on what I know is absolutely real, I’m sorry to have ever made you think otherwise; it was neither my attempt nor my goal. This aspect bothers me enough to say I am sorry if it was taken for anything more than I meant it; an exciting, exciting announcement.
I believe time will absolutely prove that this project is what all the work has all been about, of this I am sure.
I am a diabetes dad
47 replies on “A Message from Diabetes Dad”
Tom, thank you for sharing last night and again today. I too am excited as it is one step closer than it was yesterday morning. Hope is in a cure and as long as we have that we are on the right track. Your excitement and enthusiasm keeps us going.
Thank you.
I understand your excitement . I feel it as well. I have 2 type 1 kids. We’ve lived this shaky roller coaster ride for 21 years. We’re ready to get off now. I pray that it’s soon.
Thank you for sharing your excitement it renews my hope.
On behalf of the many who thought the “Cure” was being announced, thank you Tom. I hope they all realize that an “I’m sorry” is worth pure gold. And listen: you can now realize — and embrace — what an impact you have on the diabetes community. When you talk, people listen. When you get really excited, people fall right in with you. That’s a blessing and a burden. Weighing words carefully — and not always being able to say out loud everything you hope and feel — comes with that. I think your friend would be willing to let you bounce anything of them in the future if you asked. Ask them. We are a family here.
oh and PS I think the research proposal is fascinating. I never thought you were going to say “it’s cured!” so I wasn’t “let down.” but I care about the many. Right?
Does this system need anti rejection drugs??
Your article yesterday was quite clear that this is just the start of a long road, and not an imminent cure. I think if people go back and read carefully what you wrote they will see that. Your excitement is infectious and I for one am glad to see a group of people so passionate about finding a cure/long term treatment/call it what you will. As a mother of a child with diabetes I see my duty as being to keep him as healthy as possible until a cure is found. Today I feel that this is now a tiny bit closer to reality, even if it still a distance away. Keep blogging and keep that enthusiasm.
I agree 100% with the above poster. No, I didn’t get my hopes up , I agree this is a great step in the right direction, I agree there is a lot that still needs to be done. I thank you for your post today. <3
I am the mom of a newly diagnosed 2 year old boy. The last 5 weeks have been a roller coaster of emotion – fear, grief, and pure exhaustion. I hunt for things that will give me some hope that this won’t be his whole life, that someday we will not live with this horrible disease. This news gives me that hope – I know it won’t be now, or even soon, but it may be someday. I pray and pray and pray that this leads to that end.
Thank you so much for writing all of these wonderful posts, I have been a quiet follower for almost a year now and have had type one for 16 years being diagnosed at age 5 and a half. I had heard rumors of a big press release a few weeks ago from my mother who is also a very active follower and I will admit I was skeptical at first. After reading all of the information all I want to say is thank you all so much at DRI for giving all of us more hope then we could possibly imagine. Reading the press release on your website this morning brought me to tears. The thought of a cure being so real is amazing. Thank you for keeping this blog, it makes me feel so much more normal knowing that I am not the only one who experiences all of these things. Your blog makes me feel like part of a community that is so full of help, love and support and I just wanted to take a moment to say thank you.
Here’s the thing: This is an amazing and exciting prospect for us diabetics — even if it’s not immediate. It is a big step forward.
By hinting at it yesterday, however, you took all the wind out of the actual announcement. You gave people’s imaginations a chance to run wild, and there was no way this announcement could live up to what people’s first thought is when they read that the advance is “what they’ve been waiting for.”
I understand that you were excited, and I think we all should be. But I think it’s important not to undermine the real progress that the DRI is making with poorly communicated progress updates.
Next time, maybe think about an actual communication strategy and/or media release for this kind of news.
I would have loved to have woken up to an exciting new story about the BioHub. Instead a lot of us are just disappointed and frustrated by the set-up that was created yesterday.
I completely agree with Jacquie. Well said.
Exactly! I wholeheartedly agree.
Yes, you are absolutely right Jackie….especially the part:
“I am a diabetes dad……….but it very well may be, for not too much longer.” and especially with the title “This Could Be It…….What We Have Been Waiting For Since Diagnosis!!!!”….which is a CURE…not another concept on the drawing board…… my heart got broken this morning when I read the post and it “was not what I was waiting for since diagnosis!!!!!!!!!!!”
On the positive side, there is another road being studied for diabetes independence…
Tom I think any T1 parent who read your article felt and related to your excitement. I still cried while reading about the biohub….I do believe it is amazing but also a little ways away. I agree with Moira, you are someone whose opinion I value….thank you for what you do from this T1 parent. I still feel joy and hope
Tom – ANYtime I see something I think is misleading I feel angry at the source BUT THIS IS NOT MISINFORMATION! Depending on where you are in the journey of this 24/7/365 monster, the reader may get different things out of it but just like in conversation if you come in a cynic you won’t believe until you have it experienced(BY YOU) and if you are open open beginning then it WILL be excitement. I wish there was a way to convey the excitement in one’s voice while typing. It is just like you sort of put it – a large step on the right road to freedom for our kids. People will come around and no need to apologize. BE EXCITED. BE HOPEFUL. BE YOURSELF. and you will BE. THE. DIABETES. DAD. something for you to chew on: YOU have DONE so much that even when the cure comes, you WILL always be the diabetes dad to me, the guy who gave it his all when most (percentage wise) sat around and DID nothing. signed – mrs reality in Pittsburgh, PA. ;o)-
Tom, I for one appreciate this. You are a trusted voice to me in the DOC. You being excited allowed me to be excited, a feeling I’ve tucked away deep inside. I think where I felt a bit disillusioned/deflated from prequel to announcement is the goal being within an “arms length.” The goal for me is cure, gone and no more.
Do I see potential, yes certainly see this as progress but as an advancement. I guess I don’t see it as an ending point to diabetes, especially when anti-rejection drugs are involved. That part is a huge hang up for me. Perhaps this is something I am not clear on or missed completely. Right now for this to go forward, anti-rejection drugs are necessary, it kind of sounds like this is something that our amazing scientists/researchers are trying to address and eliminate. Am I on the right track?
this is what I think most are up set about in your article
The promise of restoring natural insulin production to millions of children and adults living with diabetes will be outlined.
I am a diabetes dad……….but it very well may be, for not too much longer.
there is no outline for human trail or without the anti rejection drugs as well ,I am sure you had to ill meaning in what you did but I don’t see how you can’t understand why some might feel like they do right now really??? and if not well all those post ppl posted about your article like wise to your old friend who once said there is that old saying in journalism “if someone reads it a certain way, that’s how it was written.”’ so I guess don’t take it to heart as we should not either b/c thats just journalism for you my dears
I said the bio hub was really cool, much better than what we have now. Many question ive thought of and will share in a blog post. What really gets me excited is TNF research. Nice post Tom, always appreciate your energy on all matters. Take care.
I’m grateful for the hope and to be able to share with my 15 year old son (dx at 10) that there is real hope and people striving and fighting to make a cure a reality. I didn’t know about you or DRI until yesterday, and I am five years into this. I saw your blog that was shared on FB by a friend whose son was just dx 1.5 years ago and i was shocked and got as caught up as I could last night. Thank you for your leadership and your heart as a parent of diabetic children.
Hi Tom,
You’re comment yesterday got my hopes up but after reading the announcement today I realized this concept is still at the drawing board stage as the most significant problems still needs to be address (the supply of insulin cells and the need for anti rejection drugs with side effects).
I’m diabetic and have a 1 yrs old child with Type 1 as well and I think this COULD be good news but is FAR from great news as the mains concerns with islet transplant are still there and requires more and more research. The only fix this BioOrgan brings is the long term viability of the cells in humans. Years and years of studying need to be done before any serious cure can be said.
I would try to use different words and try to not cause any more over-excitement in the diabetes community. Many people were brought to tears yesterday thinking a miracle concept was to be announced today…but no a drawing board concept (with nice potential) was announced with still similar problems as the islet transplant (less the oxygen supply problem).
Thank you for the apology. It takes a sincere person to do this. I was one of the parents (of 2 type 1’s like you ) that got really hopeful and within 12 hours felt let down. This could be because I was emotional after a close to dka experience this weekend with one if my boys. A experience that came out of the blue and so quick, that I once again anguished over this disease. It could be because, coming from you I had to believe it was something big and promising. My husband reminded me not to get my hopes up. But coming from you my hopes were up. After a sleepless night of thinking of the possibilities, I woke to what I felt was a fundraising effort. I respect you and thank you again for this post today.
Until there is a cure, I am a mom if 2 boys with t1 diabetes
Tom, I thank you from the bottom of my heart for your heart and your dedication. This news and the excitement it allowed us to feel came to us like a breath of fresh air. We are tangibly closer to freedom from exogenous insulin.
Nine years ago I heard Camillo Ricordi speak about islet transplantation and I felt hope. I felt that same hope again when I read of the tangible progress in the method and of the potential for clinical trials in 2014. Wow!
We will continue to plod along with tests and insulin. But my steps will be a bit lighter today as I contemplate the very real probability that I will see my son live without being tethered to a pharmacy. Thanks for sharing your hope with us.
So grateful for your enthusiasm. The cure may not be here today, but it is certainly closer today than it has ever been. And our HOPE continues. If you can dare to hope, than so can I.
I am a positive person (most of the time) and started out this year with the firm belief this was the year of “Optimistic Occurrences and Positive Happenings 2013”. I’ve made a jar that I’m putting into it, all sorts of slips of paper listing things that are positive. On “bad” days, I read a few, on “good” days, I add more. At the end of the year, I will be blessed to read each of these and will make a list of the great year I’ve (we’ve) had. (and I’m excited to add to the jar today!)
So far, the dreaded D-word has always been the shadow of this jar and always in the back of my mind, even on days where nothing seems amiss. Exactly one month ago Thursday, my boyfriend had a stroke. So many things could’ve gone far worse than they did…in his line of work, he could’ve not only died, but many people could’ve been killed. I find this a wake-up call and a Positive Happening; because, this Thursday, not only did he get out of ICU early, he is being released from rehab. He will be still going to therapy but is expected to make a full recovery. I’m telling you this because when you are IN a situation, you really have too many emotions going on to realistically see an outcome. (thus the many people who are showing disappointment today.) You hope and grasp at anything that shows positive. Your mind gets overwhelmed and rational thinking most often doesn’t occur. I have gone through this with my daughter and HER diagnosis of type 1 diabetes–and recognized the stroke was almost like her diagnosis week. I couldn’t think straight, couldn’t rationalize, hated situations, angry at people. Then, I thought I can’t let it feed on me and I can’t feed on these feelings. I need to re-focus. So now, I always think: everything happens for a reason. Don’t bring myself down, but instead, think positive but don’t EXPECT the positive. Be optimistic.
As I’ve read your blogs, Tom, I’ve been afraid to let myself think the best, but I HAVE been thinking there’s an Optimistic Occurrence or Positive Happening about to occur. I didn’t EXPECT the CURE to be here, but I was POSITIVE we are going in the right direction.
Tom, I was NOT disappointed! I am so ecstatic abut this news and feel you told it like it was/is and if some read more into it, it’s because they DO have hope of a cure; it just isn’t happening along their timeline. But it WILL happen and will happen in our lifetime!
I am SO happy for our kids and thankful, extremely thankful for all the DRI does and those who commit their work and lives to what they do for or kids.
Thank you and bless you, Tom, our Diabetes Dad (but not for much longer!!!)
I am sorry you are left feeling bad about your post yesterday. Frankly, I read the posts on CWD all day and thought many were going to be outraged and disappointed today. When I read your post yesterday, it seemed clear to me that a new innovation was coming but certainly did not expect world headlines announcing the ultimate cure for T1 to hit the news today. Thank you for all you do advocating for the D community. I will be watching to see what comes next from DRI & hope soon we actually will all celebrate a cure for our T1 kids and loved ones.
Thanks Kathi—I honestly do not feel bad about the post, I feel bad that some took it in manner that I did not intend. I thought I was clear and every time I read it again, I still think my words are clear……but I guess I was not clear enough. Moving forward, I will certainly make sure. It is still the most exciting thing I have seen in my twenty years at this.
It saddens me to see people that inspire me to be a better D-parent come down so hard on you and DRI’s announcement. I understand that some people will not be happy and will always feel duped unless there is an actual CURE for Type 1 diabetes. Your message spoke wonders, Tom. Be grateful you have the power to inspire so many around the world. Since my sons diagnosis I have always felt a great empowerment with the DOC. We have been able to relate with so many “strangers” on the same level. Now, I feel duped. I feel as if the DOC is falling apart and segregated and thats what is the most hurtful to me. We all have our own opinions and thoughts about things…but, I believe as long as we are going forward and not backwards we should all support one another and not against eachother.
Hi “Diabetes Dad”. I come across your stuff from time to time but am only 6mo into the “DOC” and just over a yr into my sons’ T1. I got excited with you! Of course it drew me in, you’re a fantastic writer! I also have been following “The Cure Alliance” and had known of the islet transplant success and rejection before the announcement, just not the “bio-hub” and details. I also read in a recent research article that scientists have gotten as far as pigs regenerating natural islet cells. So yes! The future is quite promising! When our son got diagnosed last year doctors here and there rumored of a “cure” (not a pancreas transplant) 10-15yrs away, and of course we embraced the hope. Some people do, others prefer not to. Those who have before and been let down choose to risk again, or never hope again…We’re just as much human as you. Carry on, dear friend. And wow! Kudos to you! Your influence is great in numbers and powerful according to many- that’s something to be recognized!
Thank you for your words, they are appreciated. I too, have been told something, many times; only to be left to hope again. I only wish people could see what I know with all my heart…….and they will…..in time. Thanks again.
Anna Booth, in 1983 when I was diagnosed they were talking about a cure in 10 years. The doctor wanted to keep me well enough to benefit from it. I’m still well enough to benefit from it but surprise surprise there isn’t one. There won’t be one because drugs companies, who have the money for research, would go bust if they cured diabetes. In fact I can’t think of a cure that has been developed for anything except for the discovery of penicillin. It was developed by British scientists, who naively went to the US to show drugs companies how to purify it, and the US drugs companies patented it, making the original British scientists pay a licence fee to produce.
Expecting a cure and being disappointed will only depress you.
I don’t understand how you can be so sure about something that has not been in clinical trials, yet? Am I missing something?
What we are being told of the pre-clinical models has been very encouraging, and I emphasize, to me. My excitent is in the entire idea of the Biohub. In all the years I have been at this, the DRI is not one to be out there, like this. They have not stated the enthusaism like this project appears to have; never seen itbeofre like this and that carries a lot of weight for me as well. Again, all of this is as per just me.
It IS exciting news. It is a clear step forward – a giant step. You were totally clear in your first post about it still having a long way to go. I think, sometimes, those who have held hope for so long start to become cynical. Me? I remain hopeful – and I always will. Hope is all we have. I look forward to hearing more about the BioHub and I am hopeful that the Australian Clinical Trials Network can get involved so that we, in Australia, have the opportunity to participate in this groundbreaking work.
Tom, I’ve been reading your posts for quite some time, and I trust you to be open and honest and truthful. I can sense your genuine excitement, and I know that excitement comes from the prospect of a cure and not the prospect of increased DRI donations.
I will say that I never expected DRI to announce a cure, nor did I expect any sort of breakthrough announcement. This information would have been leaked somehow (via FDA filings and applications if nothing else) if that were truly the case. I figured it was going to involve focus on a promising line of research or a partnership of some sort. Given those expectations, I admit that I was not disappointed. I should also re-state that life has, overall, been good to me so far, and since I’m far from hopeLESS, I don’t feel the need to be hopeFUL.
But neither am I as excited as you are. What I found was a carefully crafted marketing campaign built around an existing line of research – that of encapsulated islets. Yes, the discovery of a seemingly viable method of encapsulation is good news. The shift from “how do we encapsulate islets” to “what do we do with encapsulated islets” is very encouraging. But then, the discussion of highly-localized immunosupressants is not (where would these drugs come from, and how would they get to this highly-localized part of the body?). It suggests that encapsulation may not entirely work.
And finally, what really bothers me is the repeated use of the term “islet cells” – and this is what convinced me that this was a marketing-driven campaign and not a medically-driven one. The Islets of Langerhans are NOT cells; they are regions of the pancreas that contain various types of cells: insulin-secreting beta cells, among others. Sadly, this repeated errant use of the phrase “islet cells” tends to damage the credibility of the overall campaign.
Fortunately, I have more faith in the DRI’s scientists than I do in their PR folks, and I do believe that they may be on to something big. So, I’ll admit that today’s announcement brings about a heightened sense of optimism, but that comes with a heightened sense of skepticism. I need to see it work to believe it, and right now I just see possibilities.
Will this solve the puzzle? Will someone else’s encapsulated-islets approach be the answer? A generic vaccine? Gene therapy? I’m not sure – but I do believe there is a way to the finish line.
See you there.
Thank you Scott for writing. Dr. Ricordi will be holding a live webcast and you shoudl address your questions to him or friend him in FB and ask him directly….he is certainly better suited to answer your questions than I. Scott, I do appreciate your writing and appreciate your point of views, always do. Thanks again.
Tom,
I don’t think you have any reason to apologize. You never directly stated that a cure was within direct reach, but you did give hope. Hope is such a powerful thing. I hope for so many things as a sister of 2 t1’s and as the mother of a t1. I hope for days and nights of number in good ranges – not so high or so low that it can cause complications in the future. I hope for sleep. I hope that the supplies we use on a daily basis will work properly – that the meter reads correctly, that the pump works and delivers insulin correctly, the the cgm works properly. And I hope for a day when I can say “my brothers and my daughter are FREE from Type 1 Diabetes1” I won’t lose my sense of wonder or hope. I don’t feel that you were misleading, but that you, like so many of us, were full of excitement of the way that things are moving. And I’m so thankful and hopeful of the progress that has been made to this date.
Yesterday when I read your article I posted on my facebook page “Please let it be true! Not false hope”.
I was asked by a fellow D-Mom “What would “True” Mean to you. and what would “False hope” be? Like when you read it, what did you THINK it might be?”
My reply: “True that there would be a cure. That my two brothers and my daughter would be able to live their lives like the rest of us – no more needles, no vials of insulin, no more late nights of checking blood sugars and not wondering if my daughter will make it through the night.
No more fights with my daughter when it comes to site changes, or blood sugar checks. No more counting and weighing of carbs and food before getting to eat.
False hope – getting your hopes up, that a cure is just around the corner, only to find out that their idea of a cure isn’t what my idea of a cure its, and their around the corner and my around the corner are really a difference of 100 years.”
So now, I think of this conversation and ask myself – Is it true? False hope? I believe it is true, that we are moving forward. That we are progressing in the right direction. It is hope-inspiring! False hope – NO! I don’t feel that the ‘teaser article’ from March 4th gave me any false hope, in fact it inspires more hope.
I asked my 10 yr old daughter – what does CURE mean to you – her answer:
1. NO more needles
2. NO more pokes
3. Being able to go to friends houses all day.
4. Being able to spend the night at friends houses for birthdays.
5. Able to play non-stop
6. JUST TO BE FREE!!!
And I agree. The BioHub would do all of that! So would it be a cure? I think, that just maybe it would be!
Thank you! I look forward to reading more of the great things that DRI and you write in the future!
Thank you and the majority of people felt as you do. Say, 70%—-but the 30% who saw someting different in my post compelled me to respond with today’s writing. We will continue to work and the progress of teh biohub will surely be shared as we move further along. Thanks again for writing.
When reading your post yesterday, I never expected to hear “the pancreas will be full-functioning again”… I never expected to hear that there was a cure. I took this statement for what it said “Tomorrow on March 5, 2013 (USA Eastern Standard Time) the DRI will announce a major step towards that end.” The DRI will announce a MAJOR STEP TOWARDS the end… And that is exactly what was announced. I don’t feel as though you owe anyone an apology. You gave me HOPE in management of this disease. You gave me HOPE that I will not spend the rest of my life worrying about numbers and food–something I’ve been doing for the past 2 years because I have a 5 year old daughter that was diagnosed at the age of 3. You gave me HOPE that I will not have to hold my breath every time I go into her room to wake her. You gave me HOPE that she will get to live a life of normalcy. Every day while she was 3 she would say “mommy maybe I won’t need shots anymore when I’m 4” and then again when she was 4 she would say “mommy maybe I won’t need my pump or shots anymore when I’m 5” and now it’s the same scenario from 5 to 6… And now maybe someday instead of saying “you’ll need this for the rest of your life” I can actually say “maybe you’re right, baby!” You didn’t promise a cure… You gave us hope TOWARDS a cure. If people would stop being angry at what they misinterpreted (take responsibility for yourselves!!!) then they could see how great this will be! I’m excited! I’m THRILLED!
Thank you Kendell….I did not apologize for being excited and sharing something I truly believe to be an incredible advancement. That said, I am and will always be sensitive to how my words are taken. If people did not take my words as meant and were made to believe something else, as the writer I take responsibility for that as I might have been clearer. After the ball is thrown, it is easy to say what the play ‘should have’ been. I thank you for your words and we will continue in our efforts to end this forever.
If the DRI had found a magic lamp containing a genie who could grant wishes, perhaps we could expect an overnight miracle.
Any scientific breakthrough, be it something amazing like the BioHub or unbelievable such as a process to reverse autoimmune reactions, will take years to bring to the masses. I can see how some took yesterday’s lead-in as a hint at an instant cure, but in the cold light of day I hope those same people realise what the BioHub COULD mean for us.
My daughter is 18 tomorrow. she was diagnosed T1 aged 6. She just got accepted into the London School of Contemporary Dance on a 3 year BA Hons degree course. She has never let her condition stop her, she has never complained that its unfair that those she co Peres with for places don’t face the same challenges she does. She inspires me, every day, with her courage and determination to get right to the top.
When she gets home from New York tomorrow, where she has been dancing at the Alvin Ailey school, I get to tell her that, for the first time since diagnosis, there is a very real chance she will kiss goodbye to the rigours of her daily D routine by the time she’s 25. Yes, she has to continue to take the best care of herself, yes she will continue to draw blood up to ten* times a day, every day until that day and possibly beyond. And yes, she will go through University having to worry about night-time lows and keep briefing her room-mate about what to do if …
*possibly less when we’re not around
I get to tell her that tomorrow because people like Tom Karlya don’t do nothing. Because they won’t settle, because until we can rest assured that our kids are safe from diabetes there is no rest. Is BioHub a cure? I don’t care. Will it make my daughter safer, healthier, more free to pursue her dreams?
You bet it will. Two thumbs up from me.
Thanks Tom. Keep dreaming, keep sharing, and I promise to help and support you in any way I can.
Thank you my friend….wht did you not tell me she was in NY—a free dinner is a good thing. 🙂
[…] An apology of sorts… […]
Tom thank you for all you do for our families our babies 🙂
[…] and the social-media teaser that preceded it. You can read my thoughts on that series of events in a comment I left on the DiabetesDad blog. But this post is not directed at the DRI; it’s to the folks […]
Diabetes Dad,
I pray that you will choose your words more carefully in the future. Your words spread like wildfire. I don’t read your blog, it was sent to me by others who do. We are 2yrs into this journey with our 11yr old son. Your words deeply hurt me. I am a skeptic but I trusted you because you have been at this longer than I have and surely, you wouldn’t want to mislead such a huge audience as the DOC. Even me, the skeptic hoped….that this was IT. Look at what you wrote, this is copied right from your message…
“This Could Be It”
“my truest dedication is in finding a cure”
” It is not pie-in-sky; it is not broken promises; it is real……very, very real.”
“This very well could be our final turn.”
“I am a diabetes dad……….but it very well may be, for not too much longer.”
I won’t fall for this again, but regrettably we have new members all the time. You were irresponsible with your platform. And your apology is filled with defensiveness and justification. It is clear you do believe this is the path to the cure. But you are blind by your own hype about how seriously far away this is. DRI isn’t the only game in town, but so far the only one that has mislead me with assistance from you.
Maybe you didn’t see what your words would do, but I am certain DRI did know, and they repeated your blog to the universe.
Your plea for this to die falls on deaf ears. This is something that will live and be referred to the next time someone spouts “THIS IS IT!!”.
Hi Mike,
Love your blog! I understand why you felt the need to apologize, but I don’t understand how people could have read your post and expected a cure to be announced the next day. I think these people may have an unrealistic expectation if science. Progress is incremental with occasional big leaps forward. The discovery of insulin-big leap. Testing blood glucose levels with blood-big leap, insulin pump-big leap, cgm-big leap. The bio-hub is another big leap. You have every reason to be excited.
What? why are you comparing actual products with a drawing board concept??? The discovery of insulin, the glucose testing, the insuline pump are all EXISTING. The bioHub offers POTENTIAL!!! Contrary to the insulin, testing & pump, no one can currently benefit from the bioHub…..but this MAYBE changed someday….but not in the next 7 years for sure.
Do not compare dreams to reality. Until actual clinical trial are done and results are available, everyone should keep there feet on the ground in order to prevent major deception if the product does not turn out good or as good as they thought. I don’t believe any big leap has been taken until anything has been proven to work.
There are a multitude of other research being done and some, much more tangible and has passed clinical trial, like the artificial pancreas (which uses glucagon and insuline to imitate a real pancreas) but still not available for another 5-7 years.
It’s frustrating to hear over-exitement in post like yours since false hope and deception is not something the diabetes community needs.