Managing one’s own chronic disease can be tricky. Coordinating therapies with everyday life takes a lot of practice, as does symptom control, dealing with side effects, and contending with coverage and providers.

Type 1 diabetes (T1D) is especially challenging in this way. Daily, patients with T1 diabetes have to carefully reconcile diet, bolus and basal insulin doses, physical activity, other illnesses, and even emotions to achieve “controlled” blood sugars, and avoid dangerous hypoglycemic and hyperglycemic events. High and low blood sugars are not only immediately disruptive, and physically and intellectually taxing on patients, but a continuous roller coaster of glucose measurements (“uncontrolled”) have lasting, longform consequences including kidney, eye, nerve, and heart diseases.

So imagine the difficulty in having to orchestrate these factors and convey the ramifications when the patient is your child. Previously referred to as “juvenile diabetes”, T1D largely emerges during childhood, leaving the disease’s management in the hands of the patient’s adult parents and guardians. They learn about the disease, the many factors which must work in concert for stable blood sugar levels, and serve as the advocates for their loved one with healthcare and insurance providers. They send their children into the world trusting that they, their teachers, nurses, and other parents are all prepared with the right information to avoid dangerous low or high glucose episodes. This kind of intense attention to care, and often abrupt change of lifestyle, revolves around the child’s disease, but is profoundly felt by their parents.

People managing chronic diseases – their own or their child’s – benefit from support. Thankfully, organizations like Children with Diabetes offer parents and their children living with diabetes resources and anecdotal wisdom to help each other. This week, Children with Diabetes is hosting their annual conference in Orlando which unites children and families with type 1 diabetes, as well as clinicians for Friends for Life. Friends for Life is a week-long conference in which patients, families, and healthcare professionals convene to share information and make lasting relationships with others with type 1 diabetes.The Friends for Life community helps families build supportive networks, empowering parents to make informed choices on behalf of their child.

Technology, too, is finally developing to allay parents’ fears, the improvements providing support systems for caregivers. Some of these cutting-edge strides originated from the parents of children with T1D who created their own solutions when troubled by conventional care. The advent of data sharing and treatment innovation in this new generation of diabetes devices drives peace of mind for caretakers.

Innovative T1D monitoring

Technology is ramping up to improve diabetes management. Dexcom’s continuous glucose monitor (CGM) created headlines again last month, when Apple announced their Watch’s new bluetooth API, which connects directly to the Dexcom sensor, displaying glucose results on the Apple Watch. Rather than downloading the phone app or carrying the receiver, both of which can suffer gaps in data when connectivity is an issue, the Dexcom CGM sensor can now communicate directly with the Apple Watch. Dexcom’s continuous glucose monitor works by transmitting blood sugar readings every 5 minutes from a transmitter planted in a minimally invasive sensor, to the mobile phone app and/or Apple Watch. CGM results and alerts can be shared, so loved ones with access to the patient’s Dexcom account can have near real-time insights into the glucose data. As “followers”, parents and guardians need only glance at their phone to see where their child’s blood sugar is sitting, read trend graphs, and receive notifications and alerts.

Hacking for solutions

John Costik intimately understands the need for accessible and transparent results for caretakers of children with diabetes. The Atlantic published the story about his son, Evan, diagnosed with type 1 diabetes when he was 4, whose father’s struggle to manage his disease transformed T1D monitoring. John Costik would sleep on the floor beside Evan to test his glucose every couple hours after harrowing low blood sugar episodes. The Costik’s made the jump to a CGM to better monitor Evan’s sugar levels, but back in 2013 there was no share function for CGM datathey were sent directly to the receiver kept with Evan. Evan’s parents had no way of monitoring him when they were away from his side. Being a programmer for a grocery chain in New York state, John hacked together a fix so they could stay on top of his son’s health. He created an Android app.

Costik’s app was compatible with Dexcom’s G4, and after tweeting a screenshot of the app in use, other parents and caretakers of diabetics followed suit, some even using Costik’s open-source code (which he posted on Github). One father of a T1 diabetic sought a “more user-friendly” interface for Costik’s code, which he passed on to others via Facebook. People shared and improved resources with each other to advance diabetes technology, for better management and insights into the disease.

Parenting diabetes innovation

The Atlantic article likened a (then) phantom closed loop insulin delivery system simulating the functionality of a pancreas to Bigfoot—a conceivable but unconfirmed hirsute man-beast. This analogy inspired Bigfoot Biomedical Inc., formerly SmartLoop Labs. Bryan Mazlish, BigFoot’s CTO, was spurred to action by his family. Both his son and wife are T1 diabetics, and in 2013 Bryan crafted the first automated insulin delivery and adaptive algorithm mechanism for diabetes management.

Remarkably, the leadership across BigFoot shares two defining qualities: a dedication to creating innovative technology to better diabetes insights and outcomes, and parenting children with type 1 diabetes. Other company exectivies also have deeply personal ties to Bigfoot Biomedical’s mission. Lane Desborough, Chief Engineer who co-created Nightscout, an open-source code for CGM remote monitoring, has a son with T1 diabetes. Bigfoot CFO Jon Brilliant’s daughter was diagnosed when she was 9.

Jeffrey Brewer, Bigfoot’s President and CEO, encountered a frustrating disconnect between tech and medical solutions when his 7 year old son was diagnosed in 2002. Through JDRF, Brewer funded advancements to better control the disease which, with additional funded, evolved into their Artificial Pancreas project, in hopes to simulate pancreatic activity with an Artificial Pancreas Delivery (AID) system. Brewer joined JRDF as their CEO in 2011 and, appealing to the Leona M and Harry B Helmsley Charitable Trust, secured a grant to fund the their Artificial Pancreas team. In 2014, Brewer stepped down from JRDF to help co-found Bigfoot Biomedical, and started working on their smartloop AID system. Bigfoot began their clinical trials last summer, securing $35 million in Series A funding, as well as investments from both JDRF and the T1D Exchange towards the development of their closed-loop technology.

Born from Jeffrey Brewer’s dissatisfaction with existent Diabetes technology, JDRF’s Artificial Pancreas initiative is now fully realized with Medtronic’s MiniMed’s 670G system. It is the first “artificial pancreas” on the market, approved by the FDA last summer. This closed-loop system takes glucose readings using their continuous glucose monitor, the Guardian Sensor 3, then analyzes the data and administers bolus doses based on those results. Because the devices talk to each other, far less human intervention is required after calibrating doses and changing infusion sets and insulin reserves. This affords children and guardians peace of mind, and time better spent on other things, in addition to improved outcomes in the short and long term.

A sleep-filled future for parents

Closely monitoring glucose for tight disease management not only mitigates the full scope of complications for children with diabetes, easing parental fears, but it reduces healthcare spending. Well controlled glucose levels from a young age can prevent  the occurrence of comorbid diseases, ketoacidosis, and other potentially avoidable hospitalizations. For every child living with type 1 diabetes, there is a parent or guardian caring for them who also needs support and innovative resources. The fresh class of cutting-edge solutions conceived by intrepid parents and medical devices is restoring sleep to parents who, until recently, slept anxiously by their child’s bed on the floor.