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The road to curing Type 1 Diabetes


From the moment of diagnosis, the road is rough, the learning curve is steep and the stakes are literally life or death. The map is less-than-helpful - paths originating from virtually every corner, coalescing at a center point (aka "diagnosis") and bursting back outwards - some paths cross and wrap around each other but others are isolated. And even with all of these roads, most of the territory is uncharted - how did we all get here and how will we all exit? Where are the obstacles we haven't found yet? Which passage holds the key to unlocking the solution?

On any given day I feel pretty isolated with this disease - I'm the only T1D in my group at work, the only one in mission control, the only one in my family. I go through the logistics of calling insurance companies, ordering supplies, changing sites and troubleshooting malfunctions mostly on my own. Even those pesky carbs really only get counted in my brain, no group think for a meal bolus here. But there is beauty in community. I was reminded of this two weeks ago as I sat down for the welcome dinner at the JDRF Children's Congress 2019. In this large ballroom, with around 350 people, I could hear the symphony of sounds that T1Ds know all too well. "Boop, beep, boop" - someone is entering a bolus. "Buzz, buzz, buzz" - someone has a low blood sugar. "Buzz, buzz" - someone has a high blood sugar. "BRRRRRRRRRRRRMMMMMMMM" - someone has an omnipod malfunction. In the most cliche of phrases, I was reminded that I wasn't alone. In this room, more people had T1D than didn't. And all of us knew what it was like to live with the disease, either personally or as a caregiver.

The JDRF Children's Congress is an event held every two years in Washington, DC. This year 165 delegates, ages 4 - 17 and representing every state were selected to share their story with congressional lawmakers. The main focus of the gathering is to attend a Senate committee hearing to ask for continued funding of the Special Diabetes Program (SDP), lowering insulin costs and ensuring healthcare protections for children and young adults.  After the hearing, the delegates meet with lawmakers from their state/district and describe what a life with T1D entails. Some of the delegates are young - the youngest this year was just 5. Throughout the event, he carried around a special Teddy Bear that provided comfort during the many moments that diabetes hurts.

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I was invited to the event as a T1D role model and had the opportunity to share a small snippet of my story during a session meant to encourage the delegates to pursue their dreams in spite of the diagnosis. I wasn't sure exactly how the event would go but was relieved to find my enthusiasm for space, NASA and pursuing your passions even when facing barriers spilling out when I started talking. And everyone loved getting a NASA sticker ;-) I talked about toughness and determination. I told them how having T1D forces us to cultivate the characteristics of good flight controllers (and so many other professions) - how we inherently have backup plans, are vigilant and confident, and fortunately or unfortunately are well acquainted with responsibility.

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Even if they don't want to become a rocket scientist I hope that I convinced them to use diabetes to their advantage - to harness the skills this disease bakes in.

Just meeting these kids and their families renewed my drive for grassroots advocacy. And maybe facing such a T1D centered event, now as an adult with my own children, brought a new lens to this disease. As the patient, we often go through the motions largely without complaint, because we just have to. But as a parent, watching your child perform multiple fingersticks every day and injecting themselves with a life saving, but also potentially dangerous drug, and seeing them miss out on sleepovers or truncating their bouncy house time due to a low blood sugar, all while their peers run around innocently enjoying "kid" activities with nary a thought sacrificed to carb counts or insulin dosing is absolutely, incredibly heartbreaking. No child or their family should be burdened with these mechanics and associated judgment or misunderstanding.

I truly believe science will lead us to a cure. It is my deepest hope way down in my heart of hearts. Nothing would make me happier than if future generations didn't even know the word "diabetes" because it had dropped out of our lexicon. We are so close. And I say 'we' because curing this disease is such a group effort - it takes scientists and researchers of course, but it also takes patients and potential patients, study participants, siblings without the disease, families willing to record years worth of food and medication ingestion, companies willing to dedicate resources, regulatory agencies willing to approve interim workarounds, and lawmakers willing to support research funding bills. This experience only highlighted the desperate need for cooperation among all of these groups.

Working at NASA, and specifically on the International Space Station project, I have grown to tremendously appreciate the collaboration that occurs across borders and agendas and professional backgrounds. We work every day on a common goal - keep our astronauts safe and execute important science onboard our unique orbiting laboratory. I'm excited to follow along and contribute in whatever way I can to similar collaboration efforts in the search for a T1D cure.

These delegates, these 165 children living every single day with T1D impressed me - floored me - with their vision and passion and drive. Just think how many other, pressing scientific discoveries could be made or global humanitarian crises solved with their brainpower if it could be devoted to something other than managing this unfair and all-consuming disease.

"When I grow up I want to be a scientist - partly because T1D research is so important. And if they haven't found a cure for diabetes by then, I will." - Ruby Anderson, age 9, delegate from Maine
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And in true Nerdy April style, I have to tie a bow on this blog post with a quote from Star Trek by the recurring, ageless, omnipresent alien, "Q": "For that fraction of a second, you were open to options you had never considered. That is the exploration that awaits you. Not mapping stars and studying nebula, but charting the unknown possibilities of existence."

The road to the stars is rough - the road to a cure for T1D will surely be as well. But I'm genuinely hopeful that the results of our scientific exploration will one day result in a world without T1D - at present an 'unknown possibility of existence."

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JDRF provided my airfare and hotel for the event. The views are my own, but I think it's important to share this disclosure! 

Comments

  1. Interestingly, I heard just yesterday that this year's event was the best ever. It must have been nerdy April?

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  2. Thank you so much for the kind words Rick!!

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  3. So encouraging. Glad I found your blog.

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  4. Also glad I found your blog! My son (now 16, dx at 12) was a 2017 CC delegate. He handles T1D like a champ, but it's tough when he can't do all the usual things we do to be around others with T1D (camps, conferences, etc.). Thanks for being an inspiration!

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