As a community of people with diabetes, we have fought hard for access to these devices. Then we waited for FDA approval<\/a> in pediatric patients. We wait for industry, and the promise of each insulin pump\u2019s answer to an integrated cgms\/pumping system. We wait for researchers as they tirelessly work toward functional (artificial\/bionic) and biological cures.<\/p>\n But more and more people have grown tired of waiting. And out of necessity, comes invention. Brilliant invention.<\/p>\n CGM in the Cloud<\/a> is a concept first put forward by engineer (and father of a young son with type 1 diabetes) John Costik early last year that, in a nutshell, entails taking a patient\u2019s CGMs device real-time data, sending it to the cloud, and then allowing access to that data \u2013 again, in real-time \u2013 in remote locations, such as a webpage, a cell phone, or a wearable, like the popular Pebble smartwatch.<\/p>\n \u201cWhen we first began uploading our son\u2019s BGs to the cloud (in the form of a G4<\/a> connected laptop),\u201d says Costik, \u201cit was life changing. As our tools evolved to support uploading from an Android phone and viewing the data on a Pebble watch, we knew it was too good to keep to ourselves. The only way bring it to more people, without waiting years, was to make it open source.\u201d<\/p>\n And bring it, he did.<\/p>\n With the addition of fellow D-dad and innovator Lane Desborough\u2019s \u201cNightscout\u201d software that allowed the data to be viewed on what Desborough calls \u201cglanceable displays\u201d throughout the home, the two men found that there was a community of people hungry for homemade solutions.<\/p>\n A few dozen families came together in a Facebook community called CGM in the Cloud<\/a>, founded by D-dad Jason Adams, to support one another through the setup and implementation of the design.<\/p>\n \u201cThe group is an amazing assortment of people, motivated by love and a desire to help others,\u201d says Costik. \u201cThe testimonials and stories of hope and gratitude are more than I ever expected.\u201c<\/p>\n Now boasting nearly 7,000 families (and doubling from month to month), the CGM in the Cloud Facebook community is a social media phenomenon. Members are quick to help one another with technical issues from setup to webpage outages, appropriate use in schools to use among adult type 1s.<\/p>\n \u00a0 James Wedding, father to a daughter with type 1, found a role for himself in the group. \u201cTo me it was really the first time I had a place to make a real difference in how my daughter and others deal with type 1,\u201d he explains. Wedding laid out the initial nightscout.info<\/a> webpage, where new members to the group are first directed to explain setup, system requirements, and for troubleshooting, as well as the @nightscoutproj<\/a> Twitter feed. He felt that as membership grew, the group needed a more efficient way \u201cto keep people up to date with good information and support people attempting to get the system up and running.\u201c<\/p>\n The community has become an international effort. Well known among the 7,000 members is Manipal (India) Institute of Technology computer science engineering student Rajat Gupta. Gupta has stepped in to help more than 120 less technologically oriented families set up, maintain, and upgrade their systems. He does it all as a volunteer.<\/p>\n \u201cContributing to Nightscout is one of the best ways for me to use my knowledge for a good cause and learn what difficulties do people face, and hence what solutions are appreciated,\u201d explains Gupta. \u201cI get a chance to speak to new families everyday from around the globe, mainly being the US, which is a great exposure to me. I hope that with all that I learn here, I will be able to make some cheap solution to these problems that can be easily made available to the developing countries.\u201d<\/p>\n This spirit of sharing and support extends to the developers and designs within the community as well.<\/p>\n Kate Farnsworth, of Canada, is the mother of a daughter with type 1, and has played a crucial role in the Facebook community, \u201cholding hands\u201d and helping members troubleshoot.<\/p>\n \u201cI am contributing to CGM in the Cloud because it changed our lives significantly,\u201d says Farnsworth, \u201cand I want to improve the lives of the families that have to deal with type 1 diabetes. I want to make life better for the kids who have to live with it, for the parents who have to worry all day\/night about their kids and for the people with type 1 diabetes who have lived their whole life without this technology. I want to share this with everyone I can and shout it from the rooftops.\u201d<\/p>\n After initially helping make sure the code could be translated into mmol for those, like her, outside the United States, Farnsworth turned her attention to the popular Pebble watchface for the Nightscout suite of tools.<\/p>\n \u201cI didn\u2019t like that it would report an error code (1-14) and would scare parents who were watching, thinking their child was dangerously low,\u201d she explains. \u201cI wanted there to be icons instead. I designed a new watch face and Christine Deltrap and Jonathan Moore rewrote the existing code to make my design work and improve the functionality of the Pebble watch so it is now amazing\u201d<\/p>\n The many developers themselves, my husband among their ranks, work behind the scenes, contributing thousands upon thousands of lines of code to an open source code base and sharing emails about the development of features.<\/p>\n Jason Calabrese, involved since last summer through exchanges with Costik on Twitter<\/a>, helped Gupta and Adams get people on Facebook started up on Calabrese\u2019s early fork \u2013 or development branch \u2013 of Costik and Desborough\u2019s original code.<\/p>\n \u201cSince then, I’ve been working to add features, make the system more stable, and help other people get it running,\u201d Calabrese says. \u201cDue to lack of free time, it took me a while to move over to the community version.\u201d<\/p>\n Lack of free time. Did I mention that this is no one\u2019s day job?<\/p>\n In the beginning, Costik worked on the project\u00a0while on FMLA<\/a> time to transition his son to pump therapy\u00a0and prepare for kindergarten.\u00a0I\u2019ve watched my husband Kevin spend countless hours cleaning up code and adding features on his own time. This is a community of people who want to make life better and management easier for people with type 1 diabetes.<\/p>\n My endocrinologist asked me this week, \u201cBut does it make diabetes too big a part of your life?\u201d as she stared at the Pebble watch on my wrist displaying my blood glucose level.<\/p>\n \u201cNo, far from it,\u201d I answered. \u201cI have peace of mind that somebody knows I\u2019m okay when I\u2019m home alone with my toddler, when I\u2019m away from home traveling, when I\u2019m out for a walk. Parents can send children to sleepovers and school and not have to worry so much.\u201d<\/p>\n I imagine what this kind of technology would have done for my mother, who kept me from driving until I was 18 out of fear of low blood sugars.<\/p>\n With each new device seems to come the fear of the patient (or their caregivers) having \u201ctoo much data,\u201d but as Costik explains, \u201cBeyond the immediate knowledge of a BG, the understanding and intuition that the data brings has transformed how we manage type 1 diabetes. We\u2019ve taken back so much of our lives from type 1, and we can count our son\u2019s immediate and long term health as part of that.\u201d<\/p>\n There\u2019s a feeling among users \u2013 even those who may be frustrated by the technical aspects of implementing the system \u2013 of relief.<\/p>\n Kate Farnsworth says, \u201cIt has changed our lives. Our daughter is 11. She just started middle school this year. While we had the cloud set up last year, we also had someone at the school helping her out. This year, she is on her own with my back-up. It has meant that she can be \u201ca normal kid\u201d which as you know, is all a tween girl wants. She has way more freedom to go places now. She also loves that I have her back at all times. It lets her be a kid, and leave the tough stuff to me. Can\u2019t put a price on that.\u201d<\/p>\n Calabrese has had great success with his 7-year-old\u2019s school, as well. \u201cThe way it’s been embraced at Andrew’s school has been amazing.\u00a0 He has two different nurses and a health tech that monitor Nightscout during the day and enter treatments into the care portal. He’s now much safer at school and we all have more peace of mind.\u201d<\/p>\n James Wedding adds, \u201cIt’s little things. Probably the best was letting our daughter spend a solid week dancing this summer. In the past, we’d have been depending on her feeling the lows to catch any that came along. With Nightscout, we were able to monitor and observe the trend line well in advance of a low that would require sitting out, and treat accordingly. She spent her time at dance engaging in intensive dancing, not watching, and I think Nightscout for that.\u201c<\/p>\n Ben West, active in the development community and a type 1 himself, adds that some of his favorite stories are \u201cthe first walks alone with grandpa and first sleepovers.\u201d West calls the whole Nightscout endeavor \u201can expression of freedom\u201d for patients like himself and says that these stories \u201crepresent tiny bits of liberty and humanity restored.\u201d<\/p>\n My husband Kevin has worked on coding an app that sends push notifications directly to his Android phone. While I\u2019m wearing a standard Pebble watch connected to the cloud setup, he has a homemade app that bypasses the setup and has the CGM push data to the cloud as soon as it\u2019s received rather than poll the cloud constantly. He\u2019s got the system up and running on his phone and on the new Moto 360 piece of Android Wear and looks forward to extending the capabilities to other remote monitors.<\/p>\n Most importantly, he now knows when I\u2019m not responding to a low alarm and can text or call me with a swipe of his app.<\/p>\n So what\u2019s next for CGM in the Cloud? The future is limitless.<\/p>\n Calabrese rattles off features he hopes to see, \u201cPulling in data from pumps, adding #DIYPS<\/a> like features, more reliable alarms, more customization, group communication using the care portal, there’s no end.\u201d<\/p>\n Wedding agrees. \u201cI would like to see the Nightscout database schemed to accommodate pump and other CGM data, making it possible for other systems to record against the same timeline, allowing overlay of data of different types in a single reporting system.\u201d<\/p>\n With the Facebook group at well over 6,000 members, Ben West notes that \u201cthe community has resources to rival big vendors.\u201d Looking forward, he says, \u201cthe Nightscout community has just barely scratched the surface of what’s possible when we work together and I’m curious to find out what is possible.” Both West and Costik are in early talks with the FDA.<\/p>\n Costik has high hopes for the future as well. \u201cI am excited to see the addition of Medtronic CGM upload ability (awesome work by @JBerian), and the continued refinement of the existing tools (uploader, Pebble, Nightscout),\u201d he says. \u201cI would love to see the functionality we provide to be commonplace – under a unified set of (device agnostic) tools (Tidepool comes to mind).\u201d<\/p>\n \u201cMost of all,\u201d says Costik, \u201cI want to close up shop because a cure (functional or true) has put us \u2018out of business\u2019.\u201d<\/p>\n Of all the things we are waiting for, I think we can all agree that we can\u2019t wait<\/em> to stop waiting for that one.<\/p>\n For more information on CGM in the Cloud<\/p>\n visit\u00a0https:\/\/www.facebook.com\/groups\/cgminthecloud\/<\/a> and\u00a0http:\/\/www.nightscout.info\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" CGM in the Cloud is a concept first put forward by engineer (and father of a young son with type 1) John Costik early last year that, in a nutshell, entails taking a patient\u2019s CGMs device real-time data, sending it to the cloud, and then allowing access to that data \u2013 again, in real-time \u2013 in remote locations, such as a webpage, a cell phone, or a wearable, like the popular Pebble smartwatch.<\/p>\n","protected":false},"author":21,"featured_media":36751,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"image","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[1437],"tags":[],"yoast_head":"\n![\"CGM](\"https:\/\/asweetlife.org\/wp-content\/uploads\/2014\/09\/CGM-Pebble-Watchface.jpg\" "\\"CGM")
<\/a><\/p>\n![\"\"](\"https:\/\/asweetlife.org\/wp-content\/uploads\/2014\/09\/Nightscout-Web-View.png\" "\\"Nightscout")
<\/a><\/p>\n![\"\"](\"https:\/\/asweetlife.org\/wp-content\/uploads\/2014\/09\/CGM-Moto-360-Watchface-01.jpg\" "\\"CGM")
<\/a><\/p>\n