Evidence-Based Hope

Cautious optimism based on science

I attended the recent 2018 JDRF Orange County Research Update, because I like to keep up to date on what's new in the tech world and well, I never pass up an opportunity to see my JDRF pals. If you haven't been to a research update or read up on what's taking place in diabetes tech, I highly recommend this as a way to stay engaged with our community. You can be a part of moving us forward.

There is so much detail to dig into about the research that has been done throughout the years, but the common thread that weaves all of the work together is that hope for a cure, for lives less burdened by T1d, remains strong and lights the way ahead. 

Like many others, I was told early on in my journey with T1D that if I could just hold on for five years, a cure would be here by then. I later found out this is a common line that has been heard by patients and their families for many years. We are certainly closer to a cure than ever before, but a five year estimate still seems fairly premature from where I sit. Indefinite disguised as five more years is not an ideal timeline, but it is where we find oursevles right now, and as a patient, advocate, and someone who cares a great deal about others who can also stand to benefit from having this disease eradicated from our lives, I look to research to stay up to date on what is being done to get there and keep us healthy as we approach that ever-distant finish line of a cure.

Some criticize organizations that put funding towards exploring new therapies or technological advances instead of focusing all research dollars towards a cure. I feel strongly that, while I am cautiously optimistic about a cure in my lifetime, we are guaranteed to see tangible and accessible improvements that impact diabetes management and overall well-being and quality of life because of the diverse portfolio of JDRF funded research. Staying up to date with research being done that is moving us closer to a cure and improvements in care in the meanwhile is important to me because of the hope I see in all of these potential ways forward that don't ignore the realities of today.

Improvements in care, like faster insulins, more accurate CGMs, improved insulin pumps, and anything that reduces the risk of or treats complications, are worth funding because of all of the good those things can do in the moment. I want a cure, but I want to live my best life today, not spend my days pining for something that may not happen for many lifetimes yet. Attending research updates like the one JDRF OC hosted in February reminds me to face forward, look into the future, and realize that we can find things to be excited about and hopeful for in what researchers are showing us. 

In Orange County, we are fortunate to have UCI (University of California Irvine) labs conducting various JDRF funded research, which has been the focus of our research updates over the last couple of years. We had presentations focused on various approached from labs across campus. The directors and their hard-working graduate students have been incredibly gracious when they visit and deliver their presentations. Their efforts to break down their work in a way that makes sense to a layperson are always appreciated. They always stay after to answer more questions and tell us more about what they're working on.

At this most recent update, I enjoyed one particular analogy (that I could not possibly do justice to here) that used dog breeds as a way to explain cellular level information. I loved watching one of the PhD students smile and marvel at their slides during their presentation in a way that can only be compared to the way a groom focuses on his bride at first look during a wedding procession. I found myself smiling over the science simply because he was smiling so widely while he explained the high-level details. The passion these individuals have for their work is palpable when they come to share it with us and their energy is contagious. 

The research update crowd ranges from parents of young children living with T1D, to young adults wondering how this research might affect their futures ahead, and older folks who choose not to be jaded after hearing "5 more years" for the last 50 years. We're a tough crowd. We ask lots of questions, sitting quietly with the answers as we attempt to thoughtfully digest the implications of what we have just learned.

The researchers often tell us that they actually enjoy this piece of their work, coming out of the lab and sharing what they have been working on with the people whose lives will be directly impacted by their discoveries. They find perspective in seeing the human impact. I want them to know that they are always welcome at my table. I'm grateful for what they do and I hope they can remember that so many of us are rooting for them when they are feeling challenged by the line of work they have chosen. Many of those researchers have no personal connection to T1D and yet they have dedicated their lives to improving ours. 

At the first research update I attended, the Viacyte encapsulation project was a huge focus. There was a lot of excitement as it progressed to clinical trials. Fast forward a few years and now we know that particular method of encapsulation isn't as effective as was once hoped. That's the thing about research; we have to see it through to the end to know if what was hypothesized would turn out to be true. Sometimes it is disappointing to find that the money and hours put in amount to an answer of "not yet" or "not this way", but there is no faster or cheaper way to figure it out, so we continue on with the process. 

I can't always fully decipher the language used to get into the details of the work being done to move us forward towards the cure, but I know enough about context clues to boil it down to a message of hope and receiving a future better than what we can imagine right now.