A Glimpse Into the Future of T1D

pancreas pillow

Isabella and her “I Heart Guts” Pancreas Pillow

On Tuesday, Kristina and I had the opportunity to attend a JDRF research update featuring Tom Brobson, National Director of Research Investment Opportunities. We were excited to hear about the research going on at JDRF and, selfishly, what it means for our daughter now and in the future.

On the way to the event, Kristina mentioned that while she was changing Isabella’s insulin pod in the morning before school, Isabella looked at her and said, “Mommy, I don’t want to wear a pod anymore.”

My heart literally sunk and I felt tears welling up in my eyes. Isabella has never said that. She’s been on her pump for about 8 months or so and for the most part, she understands why she wears it and understands that she doesn’t really have a choice. But, she doesn’t fully understand that it will never be a choice…she may eventually choose a different pump, or may even choose to go back to injections…but the harsh reality is that she literally needs her insulin pump to survive every day of her life. That is, until a cure, or at least something that “feels” like a cure, is found. I began thinking, hoping and praying that we would hear promising news from Tom Brobson at the event.

Tom started his talk by saying, “I don’t have any extra letters after my name like PhD or MD…but I do have T1D.” Tom was diagnosed with type one diabetes about 10 years ago, at the age of 44. He joined JDRF about a year later, hoping to do his part to find a cure for himself and many others. As he spoke passionately about several key research initiatives, it became very clear that Tom was not only passionate about JDRF and the great work the organization is doing, but he was also passionate about making the lives of those living with type one better, including his own, on the path to a cure. He became somewhat emotional a couple of times as he spoke; this isn’t just his job, but his life!

Tom spoke about three main research initiatives, Smart Insulin, the Artificial Pancreas project and Encapsulation. Each of these initiatives have gone through various stages, navigating through the lengthy and quite costly FDA approval process. I expected to hear about how these three initiatives were showing very promising results in mice, cats or better yet, monkeys. The great news is that all three of these programs are currently in the human trials stage or entering human trials soon!  This means that we are that much closer to a dramatic change in Isabella’s life!

Smart Insulin has been in the news recently as Merck, one of the world’s largest pharmaceutical companies, announced earlier this week their plans to begin clinical trials. Smart Insulin, which was originally backed and supported by JDRF, is a form of insulin that is injected perhaps once daily and essentially turns “on” and “off” according to glucose levels. No more glucose checking. No more carb counting. No more dangerous lows. Isabella’s body could get the insulin that her pancreas can’t produce, without any additional effort or monitoring. This would be huge! As Tom put it, this could be “a game changer.” Not only for those living with type one, but also for those living with type 2 who aren’t often prescribed insulin. That’s all great news!…but unfortunately, Smart Insulin is still many years from becoming a reality.

tom brobson

Tom Brobson, JDRF National Director of Research Opportunities, showing us the artificial pancreas technology.

Tom also spoke at length about the Artificial Pancreas project. The Artificial Pancreas is not what it may sound like (no, it’s not a lab-produced pancreas that’s implanted into your body to replace the “bad part”). It’s essentially a computer program that can run on a smartphone…and essentially functions as a pancreas to ensure insulin is adjusted up or down when needed.

Tom has personally participated in several trials. He talked about one trial in which he was hooked up to the system and then was told to go eat a Five Guys burger and fries, which he gladly did, although he was quite skeptical at the time that the system would actually be able to keep his glucose under control (certainly not as good as he could on his own!). To his surprise, after eating a giant burger and fries, the system was able to keep his blood sugar under 200 and then bring him back within his normal range in a relatively short amount of time. There’s a word to describe this: amazing!

The system has performed extremely well in clinical trials. Tom mentioned that he is generally very tightly controlled and tends to be “out of range” only 4-5 hours per day. When he was on the system, his “out of range” time dropped to about 40 minutes per day. A new trial is starting soon and people will basically be handed an iPhone with the system and told to go live their lives for 6 months. After the trial, the hope is that the data and results will be sufficient to obtain FDA approval for the Artificial Pancreas. This could be 2-3 years out…while not a “cure,” it would certainly change Isabella’s life and enable her, and us, to live our days and nights without constantly thinking about her type one diabetes.

I asked Tom what he felt was the most exciting and most promising initiative underway at JDRF, fully expecting him to say the Artificial Pancreas. But, instead he talked about “Encapsulation.” To describe it, used the analogy of a shark cage. If you want to observe sharks, you could get into a cage where you would be fully protected and unharmed from sharks that want to eat you. The concept behind encapsulation is very similar…JDRF is working with partners to be able to insert beta cells into a small medical device that would be implanted into the body and protect the cells from other dangerous cells that want to destroy them. The beta cells would produce all the insulin you would need for up to 24 months. This also wouldn’t be a cure…but two years without worrying about diabetes is pretty damn close! This is still a long way off before it could be used as a treatment, but very exciting nonetheless.

So, the bottom line is that we heard a lot of very exciting stuff that inspires us and gives us hope! In speaking about his view of a cure, Tom said, “someday someone will write a book about the cure for type one diabetes and I wish I knew what chapter we were on now.” Don’t we all.

I had an additional opportunity to meet with Tom again Wednesday morning in a smaller group session at our Northeast Ohio JDRF Chapter Board meeting. He talked about the research initiatives and the fact that they are getting closer and closer to reality, which also means they become much more expensive. In talking about JDRF’s efforts to date and current efforts to push into the future, he said, “we’re the type that will take this on and change the world…but we need your help.”

Please help and join us on our journey to a cure for type one diabetes. Together, we can change the world!

-Greg

 

Dear Isabella…the letter I never wrote you.

c792cfe57f2fa8d6bed8d13b0062dfd5Shortly before our kids were born I decided I would document their life via letters written each year by me.  I think letter-writing is truly a lost art and those who know me well may know that I succumb to new technology kicking and screaming (ok, maybe not kicking and screaming, but definitely whining). I would love if my kids pick up a pen and paper some day and ask for stamp so they can mail a letter to their grandparents or a friend.  I can assure you that no matter what happens between now and their arrival at adulthood, my letters will always be on paper and include full sentences:)

I still haven’t decided when I’ll hand the letters over to them but I know it won’t be until they will really appreciate them…like laugh, cry and hug me kind of appreciation.  If this happens at 18, great.  Or maybe it won’t be until they graduate from college or get married.  What I do know is that, given their apparent inability to keep secrets from one another, the big reveal will probably happen all together.

I started my letter-writing the night before the trio was born.  I laid in bed and thought about what I imagined each of them would be like based on their personalities while holed up in my giant belly.  I don’t remember what I wrote (check back with me in at least 15 years) but I remember trying to picture them reading the letters.  I hoped that these would provide them with memories before theirs had formed and, as they get older, reminders of accomplishments, aspirations, family vacations, and first loves & heart breaks.

Last year I sat in a coffee shop in Mexico City in hopes that my emotions while writing their annual letters would be contained since I was in a public setting. I was wrong.  I wrote to Max about his bout with Scarlet Fever and his newfound love of all-things Toy Story.  I told him he’d become quite the ladies man, even at age 2, charming ladies in both English and Spanish while batting his baby blues.

The tears began to flow as I shared with Mia my fears about her delayed speech and hope that she never lets anyone dampen her amazing spirit. I told her that we are pretty sure she’ll be our hippy child spinning circles shoeless in a field of flowers, and singing a song she’s composed on the spot.

And that’s where my letters from last year stop.  Two letters, three kids.

I know that when Isabella gets her stack of letters she may notice she’s one short compared with her siblings…that one year is missing. The truth is that I tried.  I tried for 12 months to write her letter.  I’ve watched as “Write Isa’s Letter” has slowly moved down my electronic list of “To Do’s” for the past year, occupying the bottom slot for many months.

Today I finally deleted it.

The kids celebrated their 3rd birthday yesterday and, the truth is, I don’t want to write a letter filled with made up memories beginning from what is now almost 2 years ago. My mind is filled with fresh new ones from this past year like making friends from around the world, potty training (I didn’t say they were pretty memories), our move to Ohio, Disney…those are the things I want to write about.  Knowing Isabella I am sure she might be somewhat disappointed that she doesn’t have documented memories of her 2nd year of life like her siblings will, so I decided I would write a summarized version of what I should have written last year:

——–

Dear Isabella,

You are spunky, sweet, and this year you were diagnosed with type 1 diabetes.  Don’t ever let this define you. You are not what has happened to you but who you choose to become…and you are off to a pretty amazing start already.

Love,
Mom

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Cheers to changing the world,
Kristina