Dads Dedicated to Improving the World for People with T1D

: 6 Comments

HCT video photo

We’re pleased to share an amazing video from Helmsley Charitable Trust’s Type 1 Diabetes Program that features the Bionic Pancreas in action at the Clara Barton Camp in North Oxford, Massachusetts. The T1D Program at the Helmsley Charitable Trust aims to accelerate the development of tools and devices to ease the burden of living with T1D, and facilitates collaboration between its grantees.

 

We interviewed David Panzirer, Trustee of the Helmsley Charitable Trust, and Dr. Ed Damiano, Associate Professor of Biomedical Engineering at Boston University, who has been conducting the research on the Bionic Pancreas.

How is life as dad with a T1D family member?
DP: My daughter Morgan is twelve years old and is doing amazingly well as a student, an equestrian, and as a young lady living with T1D. She is very engaged in her own care and my wife, Karen, and I strive to put her in the driver’s seat as much as possible not only in life, but managing her disease as well. As a full-time parent and part-time pancreas, I struggle with striking the right balance between assisting my daughter with her disease and empowering her to do it on her own. Morgan is her own person first; she just happens to fill the role of pancreas too. This disease doesn’t just affect my daughter—it has an impact on everyone in the house. Life-changing news like a T1D diagnosis knocked us for a loop and at that point we had two choices, stay on the ground or get up and fight. Morgan picked us up off the floor and led us into the fight! After three weeks of screaming and crying with each shot and prick of a finger, Morgan took control. It was 3:00 a.m. and I had to wake Morgan to give her a correction as her BG was over 400. She was screaming and crying because she hated the shots as most six-year-olds do. I kneeled down and looked her in the eyes and said, “I have to give you a shot or I have to take you to the hospital because your BG is too high.” Morgan looked me right back in the eye and said, “Give it to me, I am doing it.” It took Morgan 45 minutes with lots of crying and false starts, but she gave herself a shot in the stomach at six years old! That shot changed all of our lives forever. That shot was Morgan picking her parents up off the floor and putting us on her back and marching forward. It was a defining moment in my life that I remember vividly as though it were yesterday. This was Morgan taking a sense of control back in her life that had been altered so dramatically. I have learned a lot about what is important in life and in many cases I had a six-year-old child as my teacher.

Tell us what keeps you motivated.
ED: I am motivated by the ultimate realization of our technology, and by what our technology will mean to me. It will mean I will finally be able to rest; to rest in every possible interpretation of the word. To rest assured in the knowledge that my son is taken care of, that he will be safe from the harms of diabetes, that he will be able to live a life without the constant fear of diabetes, that diabetes will not be allowed to torture him during the day or take him in the night. I will not rest until we achieve this, but we will achieve this, and when we do, I will finally be able to rest.

DP: What motivates me is watching how hard my daughter and PWD have to work to maintain as close to normal blood sugars as possible. To have to mimic what the body does so exquisitely by itself is a virtually impossible task. I have been given this amazing opportunity to actually have an impact on my own child’s disease. When I became a Trustee of the Helmsley Trust, it took me a while to understand the opportunity it presented. I could literally help millions of people with a disease that also affects my own child. It is an enormous responsibility and one that I take very seriously. I know we can be part of the solution for all people living with T1D, what better motivator than that?

What is most exciting as the sponsor/designer about this study?
ED: Watching our Bionic Pancreas take ownership of each and every person’s diabetes. Watching it adapt to our most insulin-needy teenagers and to our most insulin-sensitive adults. Watching it patiently and relentlessly take care of each and every person while they sleep, and watching each and every person who experiences it as they come to realize how their lives will forever be improved when that day finally comes.

DP: The goal of the T1D program at the Helmsley Trust is to ease the burden of managing this disease. We want to keep people healthy so that if a cure is ever found they will be around to see it. This study gives us the ability to test a system that more closely mimics the body’s natural processes. When you think about what are some of the major challenges in BG management I would say, youth, hormones, and exercise have to rank among the highest and we know from data in the T1D Exchange that teenagers are the ones that struggle the most with maintaining their BGs. The most exciting part about this study is we’re putting this system through the most grueling test of them all—highly active teenagers! This study also gave us the ability to work with two of our grantees in a different and collaborative way.

What are your future plans in this area?
ED: We will be conducting our second camp study at the Clara Barton Camp and Camp Joslin next summer in children between the ages of six and twelve years old. The study will be nearly identical to our first camp study in the twelve- to twenty-year-old age group. Our final study with the iPhone version of our Bionic Pancreas will take place between the spring of 2014 and early 2015 and will be our first multi-center outpatient study. That study will test our system in hospital employees with type 1 as they wear the device at home and at work for two continuous weeks. In the second half of 2015, we will begin our multi-center pivotal trials, testing the final version of our device over a six-month period in hundreds of people with type 1. If we can achieve these ambitious milestones, we can have our final device in review with the FDA in 2016 and ready for release in 2017. It has long been a personal goal of mine to get this done by the fall of 2017, which is when my son, David, who has had type 1 since he was eleven months old, heads off to college.

DP: We have four main areas in which we focus our funding: research, technology, outreach, and systems. This project encompasses two of our focus areas, technology and outreach. We understand the cure is not around the corner and our goal is to ease the burden of managing this disease and we think the way to achieve this goal is to provide PWD better tools to more effectively manage their disease while simplifying it for them. We strive to improve insulin delivery systems, sensors, and meters. The amazing part of the Bionic Pancreas studies has been the feedback from those who participated in the studies. I have spoken to people who have been in either the Beacon Hill or Barton Camp study, and not one of them wanted to give the device back when the study was over. Quite a few of them told me that they were able to get a glimpse into what life would be like without diabetes! Hearing a statement like that and seeing the results of the studies validates the technology and the need for it. (I had no doubt, but it is nice to get validation.)

What advice as dads can you share with other parents?
DP: First and foremost, our job is to love and support our children as individuals. As parents of children with chronic medical conditions, we need to equip our children with all the knowledge and tools they will need to navigate their lives and their condition. My wife, Karen, and I have three children, Morgan, Caroline, and Luke. As those who are living with this disease know all too well, this is disease affects everyone in the house. My daughter Caroline is at high risk to develop T1D and we watch her very closely. Both Caroline and Luke are involved in Morgan’s care, reminding her to check her BG, bolus, do a site change, bring her meter, etc. They are also involved in TrialNet and do so willingly knowing it could help their sister and others living with T1D. Karen is always reminding me that at the end of the day, our children will leave our home and we can only hope that we have equipped them with enough knowledge to make the right decisions not only in life, but in Morgan’s case, also with managing her T1D. That is probably the single best piece of advice I have received to date. Second would be to be as supportive as possible without being intrusive—again, something I struggle with (I read the meter and pump a lot when Morgan is sleeping). Third: there will be ups and downs as this is a marathon, not a sprint, and you have to accept that. Lastly, don’t put any limits on your children because of T1D. There are tons of PWD who are living proof that the sky is the limit.

Sign in or Register to view comments.