“The Times They Are a-Changin’”

by Wes Ton

Kerri Sparling, John Costik, Andrew Ditmer, Wes Ton Nordgren, Kate “The Saint” Farnsworth    

Kerri Sparling, John Costik, Andrew Ditmer, Wes Ton Nordgren, Kate “The Saint” Farnsworth


SixUntilMe Gave Us 33…Hundred  

In a few days we will pass the four year mark of Kerri Sparling’s first article on CGM in the Cloud and her interview with our very own John Costik.

Do you remember mid June 2014?  Our little community had exploded in growth to 1,700 members in 6 weeks.  As we scrambled to support the rapidly growing number of members that wanted to have their “CGM in the Cloud,” we had no idea that in just a few more weeks we would have an instant explosion of growth that would triple the number of members in a matter of hours. (We were still wrapping our minds around providing support for 1,700 anxious, sleep deprived individuals and parents.)

On July 10, 2014, Kerri posted her blog titled ‘We Are Not Waiting: CGM in the Cloud [Part 1].’

Then it happened, a virtual flood of people pouring into the approval queue for admission to the group, (3,300 people in a matter of hours), all seeking the same end result, the elusive respite that the DIY solution offered.  The growth never subsided and today we have a worldwide community of 55,000 members covering 33 countries outside of north America.

From Hackers to Citizen Scientists

Since 2014, our community has been celebrated, slandered, championed, marginalized and trivialized.  So when the American Diabetes Association’s 78th Scientific sessions began this past week, and we saw a proper format, a proper venue, and a proper reception for the work that had been tirelessly and painstakingly done by members of our community, it was truly amazing.  

As recent as 2016, the doors had been closed to this type of access for our community and the work of our “citizen scientists.”  However, through the persistence and determination of Dana Lewis, her husband Scott Leibrand, and Ben West, (including a bit of guerrilla marketing), their efforts paid off with a late entry poster covering “Real-World Use of Open Source Artificial Pancreas Systems” at the 76th Scientific Sessions in New Orleans.  In 2017, a foot-hold was made by Dana and Scott when they were able to display their work on OpenAPS again, (without the need of guerrilla marketing, but with just as much persistence and determination).  

Scott Leibrand and Dana Lewis in New Orleans at the 76th Scientific Sessions

Scott Leibrand and Dana Lewis in New Orleans at the 76th Scientific Sessions

Then just one year later, here in Orlando, Florida, at the ADA’s 78th Scientific Sessions, Dana and members of the #WeAreNotWaiting community had the opportunity of presenting to the scientific community with multiple presentations and speaking assignments.  As this was happening yesterday, it was hard not to hear the faint sounds of a young troubadour from the early sixties singing “For The Times They Are a-Changin’.”


All of this prompted my Tweet about the long DIY journey we had collectively undertaken in what the medical industry would term as “within a short timeline.”

All of this prompted my Tweet about the long DIY journey we had collectively undertaken in what the medical industry would term as “within a short timeline.”


If you do not know the origin story of “We Are Not Waiting,” the phrase was first coined by Lane Desborough, co-founder of Nightscout and Bigfoot Biomedical at the first D-Data Exchange in 2013.  Lane had barely uttered the phrase when the wonderful marketing mind of Howard Look, founder of Tidepool, added “Hashtag We Are Not Waiting!”  The movement that had started earlier that year now had a name and the very small original community embraced the #WeAreNotWaiting moniker and tirelessly blazed a trail for the rest of us to follow.


#WeAreNotWaiting Today

One of the big reasons that so many people know about the #WeAreNotWaiting movement outside of our “collective bubble,” is due to the sheer amount of travel that Dana Lewis does as she spreads the word worldwide on OpenAPS and that you do not have to wait to access the tools and respite giving solutions found within the #WeAreNotWaiting community.  Dana’s yearly travel schedule to conferences worldwide could make even the most seasoned “road warrior” wince, but by doing all of these presentations inside and outside of our “community bubble,” she has significantly raised the awareness of the #WeAreNotWaiting movement.

So as I type this conference blog in the wee hours of the morning, knowing that I will be back home in a day to enjoy some of that respite from the solutions and tools our community has provided to our family, I know that I will once again see a Twitter post that Dana made it through the TSA checkpoints with multiple OpenAPS rigs, as she takes another flight, to another destination, where new faces in new places will hear about an amazing solution that can be found in the #WeAreNotWaiting community.  Dana will continue to bring others the news that solutions like OpenAPS can make “the promised industry solutions of tomorrow” something that you can use…today, because #WeAreNotWaiting.

For The Times They Are a-Changin’

Cheers, Wes Ton


PLEASE JOIN US March 11th & 12th as we LIVE-Stream Season-2, Episode-1, of our Type 1 diabetes Tech show “Are We There Yet…in T1D Tech?”

We will be broadcasting LIVE from the Buttonwillow Race Track in Buttonwillow, California, where people take their racing seriously (the county is the birthplace of fellow race car driver Ryan Reed (also battling Type 1 diabetes) and the county boasts five full Racetracks).

Christopher Lewis will become the FIRST EVER Closed Loop Race Car Driver. Christopher is a longtime member of the #WeAreNotWaiting community and was a developmental driver for Drive4Diabetes (he also clocked only 1 second behind Ryan Reed’s time in the same car on the same track).

We will be LIVE-Streaming from the driver’s seat in the race car in addition to LIVE-Streaming his Nightscout/Loop website showing how adrenaline affects his blood glucose.

This broadcast is made possible through the Nightscout Foundation on KCGM-TV.

The Nightscout Foundation exists to encourage and support the creation of open source technology projects that enhance the lives of people with Type 1 Diabetes and those who love them. This includes fundraising, advocacy, and direct software and hardware development.

If you find you enjoy these type of broadcasts and projects, a donation in any amount is always appreciated (with a donation of $10 or more you will receive a vinyl Nightscout appliqué that you can put on your car, laptop, window or other location to help spread our community’s motto that #WeAreNotWaiting.

The Nightscout Foundation is a US IRS Recognized 501(c)3 Organization, and contributions are deductible as allowed by US Tax Code. Consult your tax professional for full details.