Figure 1: Drum Corps International
Meet Carson Wedding, a 20-year-old girl on her 13th year of living with Type One Diabetes who was tired of waiting for mainstream commercial healthcare to make her condition manageable.
By: Gracie Kennedy
I first met Carson Wedding in the third grade, her assigned seat being directly across from my desk. Though we had been at the same school together since kindergarten, this was our first time having a class together.
Little did either of us know the path Carson would embark on in her future, what glass ceilings she would break and what she was destined to do. However, in our Texan third grade class were the first moments in which I would see glimpses of her potential to change the world, and now the time has come for me to share her story and all she has accomplished since.
One day, early on in the school year, I walked into the classroom to find Carson’s desk empty, with Carson standing at the front of the room next to our teacher, Mrs. Tijerina. After the bell rang, Mrs. Tijerina told us that Carson had something very special to share with the class today.
Carson revealed a Pink Panther book from her bag and placed it under the classroom’s projector camera, and the projector displayed the title of the book on the whiteboard: A First Book for Understanding Diabetes.
Carson explained that it was Diabetes Awareness Month (November), and this was the first one that she had celebrated since she got diagnosed with the condition. She then talked about what this all meant as she flipped through the pages in the book, describing the realities she faced as a result of her new diagnosis to our class.
Carson Wedding was diagnosed with Type One diabetes when she was seven years old. Type One diabetes, distinguished by being genetically acquired and typically diagnosed early in life, compromises 8% of diabetes cases and is more difficult to manage.
In cases of Type One diabetes, the body attacks cells in the pancreas, prohibiting the production of any insulin. While both types of diabetes cannot be cured, Type Two diabetes can be put into remission and managed, while there exists no remedy for Type One.
It is unknown if there are any causes for Type One diabetes, and Type One diabetics can only manage their condition through external dosing of insulin to manually regulate their blood sugar levels. The failure to do so results in complete dysfunctionality of the body, and all people diagnosed must continue to manage their condition for the rest of their lives in order to survive.
Obviously, this is not something you want to be hearing at seven years old.
But young Carson didn’t see life too differently when she let the hospital. “I didn’t really think that much about it at first,” she said, “It was just kind of a new thing that was happening. I still went to school; I still went to dance classes. I only started thinking more about it more when I was older and understood that this was really something that I was going to have to do forever.”
Shortly after Carson’s presentation we became friends, and I would walk with her each day to see Nurse Martha: something she had to do multiple times a school day when she needed to administer her insulin shots. We became quite close through these walks, which continued throughout the remaining three years of elementary school.
I asked her all about what it was like for her, living with diabetes. She told me she had to give herself seven shots of insulin a day, around meal and snack times. She had started administering the shots herself only four months after her diagnosis, as her parents made sure she understood the process and the math behind it as early as possible so she could take care of herself in cases of emergencies where they weren’t around.
She also had to watch what she ate, counting all the calories to know how much insulin to administer herself. Whenever her blood sugar got low, she would get dizzy and had to eat something sugary (Nerds candy has always been her go-to) to fast-track some sugar back into her blood. She had to do this often, throughout the day and sometimes even the night.
These things were all part of Carson’s new normal, and since I was young, I admired her courage and the positive outlook she had on life as a diabetic. One particular example was her yearly celebration of the anniversary of her diagnosis, her “Diaversary”.
“I’ve phased in and out of how much I celebrated it throughout the years,” said Carson, “but my parents were deliberate with celebration in the beginning for making it another year.”
These celebrations ranged from family dinners at restaurants to birthday party-like celebrations with her friends (the first Diaversary Carson invited me to was a bowling party). Carson’s mother would sometimes even prepare party favours for the guests, it was a big deal for her to make sure her daughter found light in these early years.
Things weren’t all positive in Carson’s eyes, though. By grades three and four, she remembers having arguments with her parents about having to carry around an array of diabetic supplies, which was settled with the purchase of a Vera Bradley bag to carry them in.
Around this time, Carson began to identify restrictions she faced that her classmates didn’t have. “I remember a distinct moment when I realized other kids in class got to eat Pop-Tarts for snacks,” Carson recalled, “They were 70 carbs, which was more than I was allowed to eat in a full meal. I had a limit of 15 carbs for snacks, and 50 for meals.”
Halfway through third grade, she had completed the one year waiting period mandatory in the United States to transition from manual syringe injections for insulin to getting an automatic insulin pump device.
Insulin pumps are small devices that diabetics can attach on specific areas of their lower abdomen, quads, and triceps, and they administer insulin to the blood through a small plastic tube that is inserted through the skin. The pump administers a steady flow of insulin in accordance with blood glucose levels, providing both basal insulin necessary for maintaining long-term glucose levels throughout the day and bolus insulin for corrections and before meals, and must be replaced every few days.
Carson, a competitive dancer by this point in her life, went with the Omnipod system, because it was (and still is) the only completely wireless model.
She first became involved with diabetic technological innovation in the fourth grade, following the lead of her engineer father, James, who had immediately taken stock of the limitations within available diabetic technology and the capabilities of modern medicine.
When Carson got a Continuous Glucose Monitor (CGM) to monitor her blood sugar to a handhold device without needing to collect sample and take a reading, the only way to see the reading was through the device that she kept with her. James, not content with being left out of the loop, set out to find a way to be able to access the CGM’s data from his devices whenever she was away.
From there, the Weddings found the Nightscout project, a non-profit which provided public instructions on how to project the information from the CGM to a personal cloud that can be viewed from a website, watch, or app on an iPhone. Their slogan resonated with James, his wife Melinda, and other parents of diabetic kids: “We Are Not Waiting”. But Nightscout isn’t just for parents of kids with diabetes, its for all diabetics.
“It’s given a lot of people a new sense of power over diabetes,” said James in an interview with Beyond Type 1 in 2015, “Whether it’s parents who can go out on a date and leave their child with a babysitter, or an adult feeling more comfortable driving because he or she can just look down [to check CGM data on their devices]”.
Carson was able to get the CGM data to display on her smart watch. For her, the power she gained back, in her father’s words, meant she no longer had to dig out her Vera Bradley purse of supplies every time she needed to check her blood sugar at school or dance classes. This removed a world of restrictions on her.
Nightscout was first developed for the Dexcom G4 model of CGMs (the one Carson used), and now offers compatible solutions to a vast array of CGMs from different providers. The project is volunteer driven, primarily by parents of kids with Diabetes. By the age of 12, Carson started sending thank-you cards to donors and volunteering at conventions with members of the Nightscout Foundation with her father.
Working with Nightscout let the Weddings into a new world of community-driven technological developments, but it also highlighted the lack of research on the condition in the medicinal and technological fields.
Research on the condition is 10-15 years behind research on cancers and other big-disease research, and the political attention to the topic in the United States in this time drew attention to unfair Big Pharma price inflations of insulin, both relative to other essential medications and the price of insulin on the global market.
“There was definitely a demand for this technology and then we gave it a venue,” said James.
The “We Are Not Waiting” motto has evolved into a movement refers to the wait on commercial manufacturers to release this technology due to the hinderances around federal regulations, whereas Nightscout can remain protected under its corporate umbrella and remain focused on development towards solving the day-to-day problems faced by the diabetic community.
Since then, the Weddings have been at the forefront of Nightscout and the diabetes community, her dad becoming the president and Carson becoming the chief logistics officer (CLO). Their innovation in the world of diabetes technology didn’t stop there, it had only just begun.
There was still a glaring gap visible to the Weddings and the rest of the diabetes community: there was no way to link the activities of the CGM and the insulin pump, and get an automated system developed, something like a normal functioning pancreas.
By Carson’s early teen years, developments had been made towards a system within tubed pumps called a closed loop system, but Carson, more active than ever as a dancer and flag-tosser in her school’s marching band, didn’t want to move to a wired system.
Omnipod, stuck in their development process, put out a monetary bounty for any independent developers who could figure out the link between the CGM and their pump. Eventually, someone came forward with a viable solution.
When Carson was in her second year of high school and had just moved to Denver, Colorado, she became a Guinea pig for a software called Loop that created a CGM automatic looping system based on a phone’s Bluetooth and the radio waves from the insulin pod she wears on her body, the first teenager to ever do so.
Carson noticed a much steeper learning curve with the Loop technology than any of her previous experiments. At a Christmas parade in Denver with her school’s marching band, Carson had seven pod failures in one day, when she would usually average one or two every few months.
She discovered that the pods were failing because the layers she had to wear for the winter weather were giving off static that interfered with the Loop’s radio waves, and the battery on the device had busted. After that, she discovered that duct tape helped reduce static, but it was safe to avoid anything fleece lined in general to prevent interference with the Loop system.
“During my sophomore year, I was dealing with a lot of mental burnouts because of diabetes, puberty made my blood sugar more unpredictable to the point where I was fed up,” Carson said, “if I hadn’t have gotten Loop figured out, I don’t know where I would be now.”
The CDC says that people with diabetes are two to three times more likely to have depression, and a stat from Walden Eating Disorders says that people with Type One diabetes are more than twice as likely to develop eating disorders, because of the pressure for low carb diets.
Carson turned her energy towards advocacy and research, in an effort to change things for diabetics like herself by filling in the gaps of information about diabetes. Through her work as CLO for the Nightscout Foundation, she helps with logistics of international shipping for Loop system technology for diabetics around the world.
Now, Carson majors in Quantitative Biosciences and Engineering (QBE) at the Colorado School of Mines, the only undergraduate program in the field offered in the United States. Carson’s class will be the undergo the full four-year program, and the program will have its first graduates this spring.
The QBE program is an interdisciplinary study of life sciences in the context of computer solutions, with students undergoing training to understanding sets of biological data through computer analysis to foster innovation in the future of the field.
For Carson, this is the perfect avenue to pursue her academic passions in STEM and make significant transformative headway in the underdeveloped field of diabetic research before she has even completed her second year of study.
“There are three main areas of research [in the current field of diabetic research],” Carson explained, “and they are prevention, treatment, and bettering management tactics. I do a lot of research towards treatment and prevention right now with renversement of damage to [pancreatic cells that are attacked in cases of Type One diabetes].”
In her program, she gets to do work with a mentor at the Farnsworth lab, researching towards how the menstrual cycle affects insulin sensitivity, a topic with little to show right now, having four total papers on the subject (Carson has already read them all).
“I get to go to their lab a couple times a week to observe the grad students,” said Carson, “and I applied for funding to join the lab next fall to do undergraduate assistant lab work.”
She also works in community advocacy, this month giving a presentation to a Facebook group for mothers of diabetic kids, discussing research available on hormones and diabetes to act against the spread of misinformation on the need for stricter dieting to accommodate for menstrual periods.
She will also be informing them of the toxicity within diabetic diet culture and how to manage carbs more effectively in a healthy way. This will be her first major public venture as her own entity, independent from her father and Nightscout.
In addition to all she does in academia, Carson has maintained her passions in dance and marching band, competing in a world-class marching band as one of the visual performers, spinning flags and performing dance choreography in sold-out stadium tours for crowds in the tens of thousands. She marched with the Phantom Regiment for the 2021 and 2022 seasons.
Carson was one of four Type One diabetics within the membership of the Phantom Regiment in the 2021 season, a delightful new camaraderie for her, having never marched with fellow diabetics before. Though her fellow diabetics had aged-out the following season (membership is limited to the levels of high school and university ages), Carson continued to prove that diabetes could not stop her from doing the things she loved.
Carson is taking the summer off this year from marching band to complete an internship at the Barbara Davis center, researching towards how the menstrual cycle affects insulin sensitivity, a topic with little to show, only four papers on the subject (Carson has already read them all). She will also be producing accessible materials and info sheets on the subject to make the information available to the public.
In the future, Carson wants to stay involved in both the worlds of diabetes community advocacy as well as academic research. She also wants to establish a scholarship for other diabetic kids in marching band who want to compete at the world class level in the future.
Even through all the years I’ve known her, I still can’t predict what will come next for Carson Wedding when she graduates and finally has the tools to make the change she has sought after for all these years. But I know that she’s going to change the way the world understands diabetes, and I’ve known this since I saw her present her Pink Panther book to our third grade class, with a look in her eight-year-old eyes that screamed she was just getting started.