December 12, 2013

Until There Is a Cure


"It's time to move beyond a mere offer of hope, it is now about delivering on a promise!"   
-Ed Damiano, PhD, Associate Professor of Biomedical Engineering at Boston University

At the Children With Diabetes Focus on Technology conference this past weekend, I had the opportunity to listen to Ed Damiano give an update on his research into building the Bionic Pancreas.  Along with his team at Boston University and Masachusetts General Hospital, Ed has developed a closed-loop bionic pancreas that uses continuous glucose monitoring along with a pump that will deliver both insulin (to lower the blood glucose) and glucagon (to raise blood glucose).  His goal is to have this bionic pancreas ready to go in just 44 months!  Just in time for his son to go off to college :)

Could this truly be a reality?

After we left the conference, my mind was spinning thinking about this bionic pancreas.  I was going over every word that I had heard over and over again.  But I had to get through the rest of the day.  Pack up our friends Wendy & Jason who came in for the conference, deliver them to the airport, switch into mommy gear and off to the basketball game with my peewee cheerleaders.  All the while, it never left my mind.  I had to work really hard to keep my emotions in check while I did my mommy duties.  Monday morning, all three kids were delivered to school and then I let my brain go there again.  I was home, alone, catching up on laundry...and bawling at the possibilities that lie ahead for my daughter.

It's through Children With Diabetes that I realize I'm not alone.  That we are not the only ones tormented with the burden that diabetes places on our child.  It was this CWD conference that restored my HOPE!  Ed Damiano is just like Keith and I.  (Ok, well HE is brilliant!, but I digress...)  What I mean is that he knows the same burden.  The burden that diabetes places upon his son...this is what motivates him.


I believe in him.

I got goosebumps when Ed began to speak at the closing keynote.  The first slide of his presentation said "Making Diabetes Management Disappear..."

He continued to explain how the bionic pancreas will work.  This technology does not require the person with diabetes to even know what their blood sugar is.  No counting carbs.  No adjusting basal rates.  The system makes decisions about how much insulin or glucagon should be given without the user's input.  It is completely autonomous.

Ed talked about the clinical trials.  Watch this amazing video about one of his out-patient trials.

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He talked about results of these trials.  Amazing results!  In a 5 day experiment in adults with type 1 diabetes - walking around Boston not thinking about diabetes, they were able to achieve an average blood sugar of 131.  What was just as amazing to me was the fact that, in all 20 subjects, they experienced blood sugars below 60 less than 2% of the time.  BGs below 120 - 60% of the time.  And BGs below 180 close to 90% of the time.  This was only a five day period, but the predicted A1C for these folks would be 7.1%.  And remember, this was the bionic pancreas working autonomously.  They didn't have to think about diabetes at all!




I was already cheering him on at this point.  But, it was when he spoke about the emotional aspect of this technology, this is when the uncontrollable tears flowed for myself and Wendy (and many others as I looked around the room).  He said,
"It will be a whole different world for people who have been living with diabetes.  They will not take this for granted."
I encourage you to click these links and learn about the bionic pancreas.  I encourage you to follow the clinical trials and ask questions.  Years ago when I heard "artificial pancreas" talk, I blew it off.  It sounded like another empty promise of a cure.  I have now done a 180 in my thinking.  THIS is it!  This is a game changer for people living with diabetes.  It is NOT a cure.  But I believe until there is a cure, THIS will be the BEST option for my daughter.  It will "unburden" her life.  No, diabetes won't go away for her.  No, the need to be cautious won't go away.  No, the need to wear a pesky medical device to keep her alive won't be gone either.  But the day to day burden of managing diabetes will be taken off of her shoulders.  This "unburdening" is what makes me cry.

I want this for Ally.  I want her to experience this "unburdening of D."  

I believe in Ed Damiano!  I have hope in this research!


Listed below are a few links to resources about the bionic pancreas.

Resources:
http://www.bu.edu/bostonia/summer13/damiano/
http://www.artificialpancreas.org/
http://boston.cbslocal.com/2013/09/04/diabetic-children-test-bionic-pancreas-at-mass-camp/
http://www.youtube.com/watch?v=06rpdVs0okE&feature=share


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

3..2..1..GO BIONIC!

MY HEART SWELLS


MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW
Photobucket



1 comment:

  1. I also saw him speak at a JDRF conference in the Spring. I was so impressed and so inspired. Even though my daughter (diagnosed at 4, now 15) goes away all summer to camp and travels, etc. it is the going off the college in 2 years that scares me the most. I hope that this soon becomes a reality. Tomorrow we await the arrival of her new pump from Medtronics (her 3rd already) with a sort of closed loop on the hypo side! In the 10 years since her diagnosis, this is the most hopeful we have been!

    ReplyDelete

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