Type One Nation!
I am so inspired! I spent part of my weekend at the Arizona Type One Nation Summit (TON). TON summits are and gathering of those living with T1D and those who love them, to hear presentations on living your best life and facing the challenges of this oppressive 24/7 disease.
Make it stand out
April Blackwell
Aerospace engineer, person living with T1D.
The day started with a witty and thought-provoking talk by April Blackwell, an aerospace engineer from NASA who flies the space shuttle from earth at Mission Control, all while managing her t1D. Her dream, from the age of 6, to be an astronaut, was derailed by a T1D diagnosis at age 11. Undaunted she soldiered on and is the closest thing to being in space. She has undergone much of the same training as the astronauts. Like bobbing around is water for hours on end to pass the Army Specal Ops helicopter dunker program, given specific permission to exit the water for minutes to re-dose her insulin. To say nothing of the altitude chamber and the parachute course !!
She likens the qualities that are expected to be an astronaut (and the support team at Nasa and Mission Control) to those developed in one with T1D (and their support team at home: Mom and Dad). Think about it:
· Competence: you have to know how to give yourself the right amount of insulin at the right time.
Confidence
“Believing in ourselves as well as others, knowing th at we must master fear and hesitation before we can succeed”
· Responsibility: you are responsible for the very thing that gives you life all day every day, your insulin, and responsible for knowing what to do when things go bad, which they do.
· Aggressiveness: to advocate for yourself, the healthcare system is complicated and tough to get what you need sometimes.
· Teamwork: from Mom and Dad to teachers, doctors and friends, all work together.
· Fitness: Staying healthy, living your best life!!
The day ended with the amazing Sofie Schunk, another female engineer with T1D (you just can’t stop them!). Sofie was diagnosed as a sophomore in high school. She was already an athlete, (soccer, track, skiing and more) and had to learn fast how to not only live with T1D but be an athlete with T1D. Extreme exercise messes with your sugar levels and your insulin needs. It is no small feet to run a few miles and stay stable, but to run 26 miles! At an elite level!! She experimented and learned about her body and what it needed in balanceing fuel and insulin during grueling work outs and races. It was not all smooth sailing (or running I suppose). She crawled across the finish of one marathon, miscalculating what her body demanded to put our such enormous effort. The fact that she never gave up is inspiring! that is the kind of challenge that Sofie thrives on, and in 2023 she qualified for the Olympic Trials! She did not make the Olympic team this time, but I don’t think she is done….GO SOFIE!
In between these inspirational speakers, I got to update the gathering of 400 on the newest and most promising research! The kind of advances in devices, insulins and monitoring that will make it so much easier for superstars like April and Sofie to achieve their goals!
The future is here: we have continuous glucose monitors (CGM) that talk to insulin pumps and keep sugars steady throughout the nights. Coming are systems that can also sense the dramatic demands on insulin triggered by eating. This is complicated, what are you eating, how much are you eating and what exercise are you doing? An automated insulin delivery system that does all that, without you thinking about it, is being studied actively and much of this is funded by JDRF. The AIDANET research project out of the University of Virginia is pursuing a novel meal detection system. It is currently being tested in adolescents and young adults at centers in Denver, San Francisco, and Virginia.
It is not just the astronauts and elite athletes of the world who need this technology. Every person with T1D knows the constant worry and vigilance it takes to stay “normal” in the face of just living your life, eating a snack, playing a game of pickle ball. What joy and relief to be able drop that burden! What great improvements in long term health that will provide!
That is just one small piece of the research that I covered that day, in coming posts I will target different exciting and promising projects looking at better insulin, drugs that work with insulin to improve glucose control, drugs that can delay T1D onset, screening that can identify who is at risk, cell therapies to replace damaged insulin producing beta cells, drugs to treat the complications…and so much more. And more happens every day. I am doing my best to keep up and I look forward to sharing what I learn.