The Legacy of Katie DiSimone

Many of you may have heard the news this past week about a true trail blazer in the DIY Looping community. Katie DiSimone one of the original DIY Loopers, and developer of the LoopDocs and advocate for DIY has been diagnosed with a very aggressive form of Brain Cancer.

Many of you have asked me over the past 6 years. How can I help? I’m asking you now! for your donations to help a truly incredible woman who changed so many lives (including mine).

Please Donate to a Go Fund Me Setup for Katie and her family

We love you Katie. Be strong, Be brave, Be loved.

Jeremy Lucas
Founder GetrileyLink.org

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Thanks for the link @mohe0001. I’ve sent a donation. May God bless Katie and her family/friends. :frowning: so so sad.

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As many of you know, I’ve been using the DIY Loop setup for almost five years. It has enabled me to consistently and sustainably increase my time in range, lower my time hypo, lower my glucose variability and lower my average glucose. And it has done all this while asking less of me. It’s been a huge quality of life boost.

My entrance to the DIY Loop world was made possible by a mentor who is a part of this community. I will be forever grateful for his generous gift to me, an otherwise stranger. I learned first-hand about the We Are Not Waiting movement’s commitment to pay-it-forward as a way to express gratitude to whoever directly helps you.

During the many phone calls and Skype conversations with my mentor, he mentioned about a mom of a T1D who was getting phenomenal results for a teenage daughter using DIY Loop. This is the first time I heard about Katie DiSimone.

As it turns out, Katie was so thrilled with the results she was getting for her daughter that she decided to pay it forward in a variety of ways. She ended up the primary author of LoopDocs, a set of step-by-step instructions that even non-technical people could successfully follow.

When Katie arrived on the scene of the DIY Loop movement, she found the existing documentation, written by passionate yet verbally-challenged engineers, concise to a fault and difficult for most to follow, especially non-technical people. She took on this massive project and produced a body of work that people still use today.

When I first set up my DIY Loop, I did so with the direct help of my mentor. But this system still needed ongoing maintenance. I started to use LoopDocs to keep my system current and up to date.

Katie’s documents enabled me to finally stand on my own and independently support this critical personal health technology. Remember, DIY Loop is not FDA-approved without a manufacturer warranty or 800 number to provide support. All we have is each other and that mutual support can be enough thanks to people like Katie.

Back in 2016 and 2017, I scoured the Internet to locate older Medtronic pumps that I could use as a backup. Without a warranty, I considered a working backup pump as critical. During that time I found a purple MM 522 pump. When I received it, however, I found that it needed an important motor pedestal repair that Medtronic would normally accomplish. Medtronic, due to the age of this pump, did not do this repair anymore and this pump’s warranty was long ago expired.

I soon found a better backup pump and no longer needed the purple one. I knew that Katie had performed many minor repairs on these pumps and I contacted her to see if she knew how to repair my pump. I told her that I wanted to donate this pump to someone who needed it and if she could make it serviceable, I would do that. She not only fixed the pump but also found someone who wanted it. Katie ran on pay-it-forward energy!

I finally met Katie at a TCOYD conference in San Diego in 2019. She made a presentation on DIY Loop. The not-big-enough breakout room was packed with people sitting on the floor and standing all around the perimeter. Her intelligence, wit, and positive energy held the rapt attention of this group.

Hearing the news of Katie’s diagnosis with terminal glioblastoma brain cancer was a gut punch to me. She’s only 47, raising two young woman and is involved with Tidepool’s project to get Loop FDA-approved and out to a much larger audience.

Her accomplishments in the diabetes world humble me. I’m 20 years older than her and my personal involvement with diabetes is much longer than hers yet her accomplishments in this space are vibrant, stellar, and dwarf mine. She has touched so many in the cause of diabetes treatment in the short time she’s been involved. I am lucky to have made her acquaintance.

I fully expect that the DIY Loop movement as well as the larger We Are Not Waiting cohort will be working to construct a legacy fitting for Katie. But she’s not done yet and intends to return to work part-time.

This is tragic and brings distress thinking about the hand fate has dealt Katie. Nothing could be more unfair. It’s a reminder to all of us to live everyday, embrace the moment, and do what you can today to make the world a better place. We love you, Katie!

@mohe0001, I suggest that you retitle this post to The Legacy of Katie DiSimone.

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Luck, money, and prayers required for one of our own.
Thanks for sharing your experience, @Terry4. Your the best!
I appreciate all of their concerted efforts to restore my liberty through hard work and genuine honest effort. It mattered a lot to me to see people make an honest effort to fix things. Its a real testament to what the people around us do to support us. God bless our type III’s. We see you, Katie. We see who you are. We see the love that you have for your daughter. That love was so strong that it spilled out all over the rest of us. We are lucky she is one of ours. Maybe our luck spills out over her & her daughter now when she needs it. The Verve - Lucky Man HD Music (with lyric) - YouTube

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Thanks for the link! Wish I could have donated more! She is an absolute ROCKSTAR!

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Just a request for clarification:

Is it correct that DIY Looping is for T1D people only?

Thanks.
M.

DIY Loop is appropriate for anyone who uses basal/bolus insulin treatment whether T1D or T2D. Since this is a do it yourself setup, you need to be open to finding the equipment you need and following the well written instructions. It’s worth the effort but not for everyone.

Here’s a link to the documentation @MapleSugar. Its a lot of reading, but this is what you would read to see if its a fit for you. My personal recommendation would be to print it all out and just spend a day or two at the beach reading through it, and then give yourself some time to think about it and come up with questions.

https://loopkit.github.io/loopdocs/