My Aunt Mary Jane: After 70 years of struggle, she’s still “kicking” back at Type 1 diabetes & cheating destiny

Every picture tells a story.  Yet it doesn’t tell the full story — especially when a chronic disease like Type 1 diabetes is lurking below the scene.  Over the next few months, I’d like to tell some summer mini-stories dedicated to my Aunt Mary Jane, who recently celebrated her 80th birthday with a party in Nellysford, VA.

If anyone lives to the age of 80, they’ve overcome a lot of odds. If you add a Type 1 diabetes diagnosis at age 7,  a complete lack of any blood glucose testing systems, and throw in four children to raise,  and you’ve got a lifetime challenge. Mary Jane tells me diabetes took over her life one day when her sister, my mother – Cecilia, and her younger brother– John, came home from preschool with the mumps.

My Aunt Mary Jane Dull Hoffman, center, is celebrating her 80th Birthday in April at her homeplace in Nellysford, VA with two of her “favorite” nephews, Phil and me ( Front Right). We are joined by my wife, Lisa, my children Cecilia and Nathaniel, and Phil’s daughter Sammie.

“I’d rather they brought me the mumps, instead,”  said Mary Jane. “They got over the mumps in a few weeks. That virus is what cause me to have diabetes for a lifetime. That’s my biggest gripe with diabetes:  it’s too much to do. Do this, do that…Every day it’s something else to do. I’ve done a lot of it by the seat of my pants.”

And then Mary Jane smiles:  “Since I don’t have my feet anymore, it’s a good thing I’m flying by the seat of my pants most of the time.” After you stop laughing at the irony of a T1D who is a Joslin Medalist honored for “surviving ” diabetes, you see clearly what diabetic complications really mean. Feet are gone. And she’s the lucky one.  And then you realize: Diabetes continues to suck and if I don’t manage my Type 1 like a mad man — I could lose my feet and a lot more.

Here’s my goal in highlighting Mary Jane’s story:  To show that surviving Type 1 diabetes requires effort, luck and stubborn commitment to each day being better than the day before. In order to beat diabetes — which we have not done yet — a person also needs a healthy dose of  kiss-my-butt craziness.  When you’re sick on the inside but you look perfectly “healthy” on the outside, it’s not easy to generate a sense of urgency for more research, more awareness, and more money.

My other goal here:  To announce that I’m riding again in the JDRF RIDE FOR A CURE at Amelia Island, FLA on Oct. 30, 2016 and that all the money I raise — thanks to all my compassionate supporters — will go to JDRF and its support of Dr. Boris Kovatchev and the researchers at the Center for Diabetes Technology at the University of Virginia. The CDT team in Charlottesville is part of a five member university consortium still trying to bring an Artificial Pancreas System to reality. Funds raised support worldwide human clinical trials required to convince the FDA that it’s time to approve an AP or a bionic pancreas which will deliver better glucose control and fewer serious medical complications to persons living with T1D.

(I will add a blog update on my current participation in the ” Project Nightlight” Home AP trial — 3 weeks are done and the closed loop is working exactly as advertised — nighttime under control.)

I’m not a young man any more — so it comes down to this:  My marathon journey for a cure has become a sprint to the finish line. It’s like the riding the final stage.  Aunt Mary Jane was promised a cure when she was first diagnosed in the 1940s.  Seventy years later, the promises are still being made and we’re still pedaling up hill with our real and artificial feet!

Aunt Mary Jane and I may not cross the ultimate finish line — A cure to Type 1 diabetes without tech solutions, but we want to be counted as two people who tried to make it happen. Together, We R the Cure.

Chance Chat At Work Leads to Blog Revival: Quantum Cascade Laser Tests Blood Sugar Without Finger Pricks

Happy New Year to all my Type 1 diabetes friends and #DOC community. After a long, long blogging vacation … I’m back to writing again thanks to a chance chat with a colleague at work today.

Members of the research team test the new laser system. Images courtesy of Frank Wojciechowski/Princeton University.

It was a completely unscripted meeting. As I was in the men’s restroom testing my blood sugar at work, Jonathan walks in, sees me and my bright red blood spot on my test strip. Then he asks: how many times a day did I ” prick my finger” for a blood drop to test my glucose. My normal answer: 8 to 10 times a day. Then I stop myself wondering if we’ve got a connection?

After a few soundbites about testing, insulin pumps, CGMs and all the standard stuff from me — Jonathan pauses and says: “Before I came here I was working in a research group at Princeton that is working to use lasers to accurately measure blood sugar without needing a finger prick,” he said.

Dramatic pause. The sound you heard is my jaw dropping and hitting the bathroom counter. First time I’d ever heard this possibility. The possibility of fewer finger pricks for blood testing is a dream for all of us T1Ds. Wave a magic wand or light beam over your finger and the BG results sync up with my soon-to-be-real Artificial Pancreas closed-loop technology!  Wow, my mind is now racing and I’m back in the blogging game. Here’s the link to the full story. Read it and let me know if you’ve heard of this research?  Together, We R the Cure for Type 1 diabetes and its serious medical complications!!

A team from Princeton University has developed the new technique, which measures blood sugar by directing an IR quantum cascade laser at a person’s palm. The laser light is partially absorbed by sugar molecules in the patient’s body; the amount of absorption is used to measure the level of blood sugar.

According to the researchers, the results indicated that the laser measurement readings produced average errors that were somewhat larger than standard blood sugar monitors, but remained within the clinical requirement for accuracy. In measuring blood glucose levels, readings must be within 20 percent of the patient’s actual blood sugar level. The new system has demonstrated 84 percent accuracy.

“We are working hard to turn engineering solutions into useful tools for people to use in their daily lives,” said Claire Gmachl, the Eugene Higgins Professor of Electrical Engineering and the project’s senior researcher. “With this work we hope to improve the lives of many diabetes sufferers who depend on frequent blood glucose monitoring.”

Turning Type 1 Diabetes Into Type None: Mad Men, Women and Youth Cycle Hundreds of Miles For Each Other

The Central Virginia JDRF Ride to Cure team lines up for the tune-up ride before the Ride Day. We’re sporting our Pink and Green designer Hincappie jerseys. Real Bikers wear Pink! What a great team!

BURLINGTON, VT — This is a story about a boy, his bicycle, and his deadly disease. The story opens with this boy standing somewhere at the top of a rolling Vermont hillside on a beautiful, chamber-of- commerce-picture-postcard day near Lake Champlain in upstate VT.

First  JDRF Ride. On the training ride 1 day day before the big day, I’m letting my donors know that they are Number 1 with me. Thanks. We did this.

The view, the 70 degree temps with a slight breeze, and the sense of success  are amazing. And so is the damn flat back tire — My third in 17 miles! But that’s another story for another post.

Key words in this compelling narrative: the boy is standing at the “TOP” of the “hillside” with a “Disease.” This story, however, is not about a disease and getting sick. It is about beating that disease. Stomping on it. Tearing out its heart. Reaching inside and pounding that disease up and down into the pavement of Burlington. Boy, does it feel good to have done that! 🙂

The story is my story.  This is also  the story of our Central Virginia JDRF Ride to Cure Diabetes team from Richmond. Eleven strong riders and 1 amazing team supporter — Ellen.

Most importantly, the story is about almost 300 mad men, mad women, youth, friends, family and new friends who came together on July 24-27 in Vermont to prove to each other and to themselves — that there’s NO Quit in Type 1 people.

Type 1 people are compassionate and unwavering in their quest to turn Type 1 Diabetes into Type None for the 3 million Americans living 24/7/365 with this unfortunate chronic killer.

In one weekend, this amazing group of human beings rode hundreds and hundreds of miles and raised more than $850,000 — THANKS to our AMAZING SUPPORTERS — to fund the clinical trials and research being done now by scientists who are peddling the pathways to a cure and new tech solutions.  Our Type 1 group doesn’t ride any “Yellow Brick” Road.  This is not a fairy tale. We know the road to a cure is a long, winding, steep, unfair, depressing, fearless, and physically demanding climb. Yet, we all keep coming back for one more climb each day.

I had one of the best times in my life. Met a new, formidable challenge and loved almost every minute as I delivered a whipping to Type 1.  Actually, that’s what Type 1s do every day.

Here is my Top 10 things learned about Riding to Cure Type 1 Diabetes that I posted on my Twitter page @werthecure  in the days leading up to July 26. A few more stories and key T1D takeaways — i.e. why does my Liver make its own sugar and dump it into my blood stream when I don’t want it to do that? — will be posted in future blog posts here.  Thanks for reading and engaging.

And the Burlington VT Vimeo is worth a thousand words, too.

http://vimeo.com/102024191
Top 10 things I’ve learned training 4 @JDRF_RIDE

Num1A: Cycling is tough enough. Try wearing a corset. T1D, Insulin Pump, CGM
Num1: My CVA teammates R amazingly super. $50K for #T1D #burlington
Num2: U can ride, eat shotbloks, check BG and chew gum at the same time. #notafraidtofall
Num3: Must have good bike. It’s even better if #TeamMajikes has 2 U can borrow! #thankful
Num4: Cycle 2+ hours. Manage BG Carbs in route. Post-ride BG stays below 70. WTF #T1D crazy
Num5: Cycle 2+ hours. Manage BG in route. BG may soar 300 post. Liver needs more carbs?
Num6: Pick a scenic training route. Luv #Goochland , Miller Lane & touching 9-11 Memorial
Num7: Don’t leave home without your #Dexcom4 It is a must have tool. @JDRFCVC
Num8: Quality bike shorts and ButtR cream. Nuff said.@JDRFCVC
Num9: A good coach is critical.@JDRFCVC has 2 great ones Matthew and Lisa. See Number 1.
Num10: Wearing biker shorts in front of others. A Profile in Courage

Should Type 1 Diabetes Advocates Have Sharp Elbows? Status Quo or Act Up — What is the right pathway?

What does advocacy mean? Is someone who advocates for a cause they believe in — not to be confused with a paid advocate — actually able to make things better, to make change happen at a local, regional or national level? Well, it’s time to find out.

I am a new member of Diabetes Advocates. Excited to be an advocate. What can we achieve together?

I did not prepare a speech, but I am very honored and excited to have my membership application accepted by the Diabetes Advocates non-profit group. Thank you to the Academy!

The question for me to answer is — how do I actively participate and how do I add my time and voice to the growing chorus of Diabetes Online Community (#DOC) leaders who are real people, not actors on TV, who wake up each day with Type 1 Diabetes and envision a better future for themselves and the next generation of Americans who get this game-changing diagnosis. The DOC has done great things for all of us connected to diabetes.

Are we advocates or practical agitators. Or something in between? The recent article in Insulin Nation about The Juvenile Diabetes Cure Alliance (JDCA) — Practical Cure Advocates — should make all of us stop and think. What change do we advocate for? If we want more human clinical trials, higher-tech technology and a medical cure for Type 1 diabetes — it’s up to us to make it happen.

“Scientists have made careers in proving a concept in mice…we want to push against that gravitational pull” of mouse-only research, Phil Shaw of the JDCA told Insulin Nation.

I’ve been a volunteer and fundraiser for many years with the Juvenile Diabetes Research Foundation — the Central Virginia Chapter. Thru my volunteer work I’ve met some incredible children, teens, adults and selfless parents — and developed friendships with some of the best people I’ve ever met — the people you wish you never had the good fortune to meet. I’ve also been a participant in and an advocate for human clinical trials, and I see how the money raised for Type 1 research does make a difference in our daily lives. However, no matter how hard we all push, we’re still waiting for  better tech, better solutions and a future free from Type 1.

For today, it is my honor to be a new DA and to proudly post the group’s goals. Tomorrow is a new day. Together we are stronger.

Diabetes Advocates is a program of the Diabetes Hands Foundation, a nonprofit organization that brings together people touched by diabetes for positive change so that nobody living with this condition ever feels alone.

Mission
To connect advocates dedicated to improving the lives of people living with diabetes in order to accelerate and amplify their efforts

Goals 2013-2015
1. Continue growing the reach and impact of the program, by:

• Creating paths for diabetes advocacy for members of the diabetes online community.
• Increasing the number of Diabetes Advocates members focused on type 2 diabetes.
• Increasing the number of Spanish-speaking Diabetes Advocates members.
• Increasing awareness about Diabetes Advocates, starting with an emphasis in the US.

2. Increase the measurable impact of the program through:

• Increasing member engagement in Diabetes Advocates initiatives.
• Expanding benefits that impact sustainability and member development.
• Hosting an annual Diabetes Advocacy Congress.
• Consolidate Diabetes Advocates as a hub for collaboration among diabetes advocates.

Ending the A1C Blame Game: Reposting a “Must Read” From MD on Insulin Nation

Research Corner: Ending the A1C Blame Game (via http://www.insulinnation.com)

When glucose sensors first became available in clinical trials some 2 decades ago, I decided to wear a sensor to compare my glucose levels as a non-diabetic individual with glucose levels of my patients. I was excited to have this new tool, which measured…

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Mathematics, Mary Tyler Moore, and Standard Deviation, Oh My! We’re Gonna Make It After All

The headline, I hope, made you stop and wonder. Math. Mary Tyler Moore. Standard Deviation? Three random sounding topics that actually have one thing in common: Living with Type 1 Diabetes, of course.  The balancing act is the perfect excuse to republish some of Mary’s best quotes — about her battle with the disease — on our complicated journey toward better health and cheating our destiny.

Mary Tyler Moore greets President Obama during the 2009 JDRF Children’s Congress event in Washington. DC. She is flanked by her husband, Dr. Robert Levine, and boxer Sugar Ray Leonard.

“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers, and dietitians all rolled into one,” Mary has told members of the United States Congress during JDRF’s Children’s Congress. “We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”

I also know that a photo — or in this case a You Tube video from @Blogdiabetes friend Tony Rose — is also worth a 1,000 amazingly insightful words from me, the CEO, Editor-In-Chief of “We R the Cure.com.” Right? As I learned in Journalism 101, it’s time to get to the “So What?” or “hook your audience now” or lose them forever sentence.

After living and dying in three-quarter time with Type 1 diabetes for 15+  years, I’m actually beginning to figure out how much effort, dedication, cool technology and sheer luck it takes to “control” my blood glucose. The answer: It takes every waking second of every day, and that still does not guarantee an A1C less than 7 or eliminate the rollercoaster blood glucose ride. I love coasters, but the more you learn about this crazy,  chronic disease, and the harder you work to control it using insulin pumps, meters, CGMs and Apps — It still winds up controlling you most days.

For the past 4 months, I’ve been religiously wearing my new DexCom 4 Platinum CGM — which I love. And, as the images here will show — my standard deviation has dropped from 68 to 58 and is approaching the 50 reading which, according to Laura Adams, Certified Diabetes Educator with DexCom, is the number persons with type 1 diabetes (PWD) should aim for when seeking to control their glucose. In fact, Laura says a standard deviation reading between 50 and 40 on my DexCom ” Studio” reporting App should be the target. Fortunately, calculating the SD number is done automatically by the App based on my CGM numbers. They’ve taken the math out of my hands.

In Part 2 of this blog story, we’re going to dive deeper into the math and determine if standard deviation, A1C or something called “Glycemic Variability” is the true “gold standard” of BG control?

For now, I’ll leave you with these positive trendlines from DexCom App, which does not sync up with my insulin pump App (Diasend) — but that’s another story. Let’s call this my starting point as I aim for better control with the goal of reducing the possibility of serious health complications such as blindness, heart disease, stroke and amputations. I am in charge of my own cure, and getting better control of my numbers is the key.

DexCom Success Report as of March 20, 2014. Standard Deviation and percentage of time spent “in target” is trending in the right direction.

The pie charts show the percentage of time spent in hypo ( low), in target range and in hyper (high); This compares current month to prior month.

The good news: My numbers are getting better thanks to technology, effort and some luck. The sobering news: this is a 24/7 battle and there’s never ever a day off.  Don’t take my word for it, take it from my Type 1 best friend, MTM:

“Chronic disease, like a troublesome relative, is something you can learn to manage but never quite escape,” Mary explains on JDRF.org’s website. “And while each and every person who has type 1 [diabetes] prays for a cure, and would give anything to stop thinking about it for just a year, a month, a week, a day even, the ironic truth is that only when you own it — accept it, embrace it, make it your own — do you start to be free of many of its emotional and physical burdens.”

We’re gonna make it after all. We R the Cure.

Researchers Agree: The Status Quo Is Not Acceptable; We Need More Clinical Trial Participants To Drive Progress

Imagine my surprise and excitement when a leading Type 1 diabetes researcher, Dr. Desmond Schatz of the University of Florida, unofficially promoted our “We R The Cure” blog site during the JDRF Type 1 Diabetes Research Summit on Feb. 18, 2012. Let’s roll the audio tape:

We R the Cure — and so are you. Sign up for a clinical trial today.

“We do not have enough people participating in research studies,” Dr. Schatz told several hundred Type 1D enthusiasts in his opening statements. “My goal is to give you hope, to inspire hope, and to push you to get involved. Without U, there can be no cure.” Almost on cue, an outburst of applause came from the adjacent ballroom where young children with Type 1 diabetes were playing and having fun while their parents attended the JDRF Summit. Dr. Schatz heard the applause and laughed. “I am here to make it clear, that the status quo (in Type 1 research) is unacceptable!” And again, the children cheered right on cue.

This blog is dedicated to the patients, doctors, nurses, researchers and big thinkers who are actively pushing research forward – in our search for solutions & cures for persons living with auto immune disorders such as type 1 diabetes and certain forms of cancer that are tied indirectly to weakened immune systems or a virus attack. If you’re ready to learn more or join a clinical trial, check back here often for news and information. Or simply click on Clinical Trials to get started.

My name is Mike Anderson, and I am the creator and editor of We R The Cure. I received my Type 1D diagnosis — from out of nowhere — in May 1998. Together with my friends and family, I am a passionate advocate for raising awareness and raising dollars for research and real solutions that will improve the quality of life for children, teens and adults living with this chronic disease. And one day — A cure or many cures.

A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge.  There are two main types of clinical studies: clinical trials and observational studies.    ClinicalTrials.gov includes both interventional and observational studies. So, what R U waiting for … Think about joining a clinical trial in 2014. It’s a new year’s resolution that is worth keeping. Thanks for your participation. werthecure.com

Resolutions To Keep In 2014: One Small Step For Man, One Giant Leap … For Diabetes Awareness

Welcome back to We R The Cure, 2014 Edition. I am happy to be back among the Diabetes Online Community.

Artificial Pancreas Closed Loop System

Yes, I’ve been away enjoying Christmas, New Year’s, working, searching for new work and — most importantly, focusing on what matters the most to me: Family, Friends and Faith. If you guessed that what matters most is my Type 1 D, well — you were close but wrong. Of course, it should have been a multiple choice answer.

If you are a person living with Type 1 diabetes, managing your sugar highs and lows is  ALWAYS on the list of what matters most. Healthy and active on the outside; dealing with a chronic, life-threatening disease on the inside. It is a frustrating condition for the 3 million Americans — toddlers, children, teens and young adults — living with it.

A new year is here, and it’s time for me to join the “New Year Resolutions” chorus and to get my editorial content calendar back ON THE GRID. So here goes my Top 5 list of what We R The Cure will focus on in 2014. Of course, the numerical ranking may switch or slide during the year. What is number 1 today, may be number 2 by year’s end. But you get the idea.

1. Tell the story of my Aunt Mary Jane.  A Joslin Center Medalist who’s been living with Type 1 diabetes for 7 decades and is still waiting for the cure they promised her back in the 1940s. She’s a survivor who has lived the ups and downs of diabetes since the age of 7. She’s got a story to tell.
2. The focus of ” We ” R The Cure is the amazing Type 1s, the researchers, the doctors, and the clinical teams pushing hard to bring tech solutions like the Artificial Pancreas to market. The focus is on all clinical trial participants. If you are participating in a clinical trial and want to tell your story — please contact me. Your story needs to be told. And we need to encourage more Type 1Ds to seek and participate in clinical trials. We need more guinea pigs.
3. Research and technology “News that we can use.” As a former reporter, my job is to highlight and interpret the daily digest of exciting and confusing news surrounding Type 1 and Type 2 diabetes.
4. Wearing My new DexCom 4 and, hopefully, the DexCom 5 in Clinical Trials at the Center for Diabetes Technology at UVA. The DexCom 5 will send its results directly to the Artificial Pancreas smartphone and not to the transmitter. This must be tested and proven successful before “Home” AP trials can begin in 2014.
5. Biking for the Cure in 2014. Finally putting this on my ” bucket list” and doing it. The target goal: Riding 60 or 100 miles, raising money for diabetes research, and keeping a journal about my training and crossing the finish line.

 

OK, there it is. I’ve placed my resolutions and goals online. WeRThe Cure is ready for another year — year 16 — of balancing life and diabetes. With the love and support of my spouse, family and friends — 2014 will be another great year.

Thanks for reading. Please comment or share ideas or stories.

Mike Anderson

The “Highs and Lows” Of Type 1 Diabetes Clinical Trials: Some Days You’re the Windshield; Some Days You’re The Bug

Laura Kollar, right, Clinical Research Coordinator and Nurse Manager at UVA, spent her Saturday morning guiding the health screening for trial participants at Barringer Wing. Thanks Laura!

As I ponder the current ” Ups and Downs” of my participation in a new Type 1 Diabetes Clinical Trial at UVA, two quotes come to mind. One comes from a famous figure in American history; The other comes from my father, a UVA alum known for his wit and wisdom throughout the Anderson clan in Virginia.

“Do not put off till tomorrow what can be put off till day-after-tomorrow just as well.” — Mark Twain

“Growing old ain’t for Sissies.” — Howard Anderson

I think both are fitting words for the inconvenience, effort and the amazing satisfaction that comes from giving your own blood, sweat, and sometimes a few tears to help researchers move us all one step closer to finding a ” Cure ” or high tech solutions that will improve the quality of life for persons living with T1D.  Last month I joined a new clinical trial at UVA’s Center for Diabetes Technology — my sixth trial since August 2010 — titled “Biobehavioral Mechanisms of Glucose Variability.”

Trial participants will track their insulin sensitivity results over about one month and travel to Charlottesville for an in-patient stay at UVA Hospital to measure,  through continuous blood analysis, how a person responds or counters a high and a low blood sugar. A greater understanding of these issues will help researchers, doctors and digital technology leaders finish key parts of the Artificial Pancreas project — a closed-loop insulin pump technology designed to better control glucose levels in T1 diabetics and reduce the serious medical complications of diabetes.

On a Saturday morning in October, I waited outside Barringer Wing at the old UVA Hospital complex for my health screening to start. It is always a very emotional and cool feeling for me to be back at Barringer — I’m walking the halls where my mother and father were on the day of my birth back in 1961.

Participating in a clinical trial is a volunteer labor of love. No one forces you to sign up. ( Attention: We need more people to sign up for clinical trials all over the world!! ). You are able to step out of a trial at any point. The truth is: it’s amazing to participate in cutting-edge medical technology like the AP and I’m hoping to benefit from the results of the research — automated glucose management that leads to better long-term health and less complications.

In a snapshot, here are the highlights of the first 3 weeks of my study. The BIG EVENT happens this week — when I complete my 12-hour in-patient stay at UVA hospital with the CDT medical team.

• Week 1: Go to Lab Corp and get pre-trial blood work done and results shipped to UVA; Travel to Cville for health screen with medical team; Attach trial DexCom 4 Continuous Glucose Monitor (CGM); Go shopping at grocery store for pre-planned meals — breakfast, lunch, dinner and snack with exact carb, protein and fat grams — to be used for my 4 Insulin Sensitivity days; Do  “Twice” the number of normal finger sticks in order to record BG data in my trial meter and my own insulin pump meter — Ouch!
• Week 2: Eat 2 tasty pre-packaged meals and record the exact food nutrition information on the spreadsheet provided by Stacey Anderson, MD — who is no relation to the Anderson clan but a cool coincidence that we share the same last name; Discover that the DexCom CGM sensor applicator — does not always work and actually draws blood from my abdomen site; Keep doing the finger sticks — 9 to 10 times a day for two meters and for calibration of the CGM — Ouch!
• Week 3:  Get day off from work approved; Discover that the ” hidden gem ” of the trial study is NOT going to happen yet — wearing the DexCom5 CGM prototype in addition to the DexCom 4 CGM; The DexCom 5 is being manufactured specifically to work directly with the Artificial Pancreas SmartPhone — delivering blood glucose results to the SmartPhone and not to the normal CGM receiver. This is one of the remaining “closed-loop” research items to be completed before the AP can become commercially available.

For now, that’s my story. Stay tuned for my next blog post and photos — from the in-patient glucose variability trial at UVA this coming week. Remember — We R the Cure. We R the ones who will make a brighter day for Type 1 diabetics.

Another Step To An Artificial Pancreas And Better CGMs: Spending The Night at The Duke House, “Sunnyside,” In Historic Charlottesville

This week I’ve started a new clinical trial at the UVA Center for Diabetes Technology in Charlottesville. It carries an impressively long scientific study name: Biobehavioral Mechanisms of Glucose Variability. Impressive, right? The purpose of the study is to investigate how blood sugar changes in response to insulin and what the body does to counter-act low and high blood sugar in people with Type 1 diabetes. The month-long study, funded by the National Institute of Health (NIH),  ends with an in-patient stay at UVA where my blood sugar will be raised to 250 mg/dl and then lowered ( using additional insulin) to a hypo level less than 65 mg/dl. (Insulin Sensitivity is the term used to describe these changes in the body).

There’s also a hidden surprise in this study — testing a new piece of Continuous Glucose Monitoring ( CGM ) technology designed to work in tandem with the new Artificial Pancreas closed-loop system. But, I’m getting ahead of the story.  I will post updates on my clinical trial starting this week and until the trial ends in November.

The Duke House, ” Sunnyside” built in 1800

My trip to Charlottesville for Day 1 of the trial included a nice surprise for me — an American history lover and a native of Charlottesville. Prior to my Saturday morning health screening,  I was allowed to spend the night at The Duke House, also known as “Sunnyside”  on Barrack’s Road located on the North Grounds. The house is owned by the University of Virginia and is presently used as a guest house for participants in the Diabetes Center for Technology clinical trials.

The original section was built about 1800, as a 1 1/2-story, two room log dwelling. It was expanded and remodeled in 1858, as a Gothic Revival style dwelling after Washington Irving‘s Gothic Revival home, also called Sunnyside. The house features scroll-sawn verge boards, arched windows, exposed beam ceilings, and a fieldstone chimney with stepped weatherings and capped corbelled stacks topped with two octagonal chimney pots.

I was welcomed to The Duke House by Dr. Sue Brown and Laura Kollar, RN, for the Center for Diabetes Technology at UVA. As I settled in for sleep late at night in the charming old house — which does have all the modern amenities — I did wonder if it would be the perfect setting for the TV show ” Legend of Sleepy Hollow.” Fortunately for me, it was only the small feet of mice that could be heard running in the walls and the halls. Or maybe it was a Type 1 D searching the kitchen for a juice box?

The original house was a log cabin built in 1800s by the Alpins family and the Sunnyside property is one of the oldest in Albemarle County. It also contains the remains of the 1806 County Poor House and was purchased the The University of Virginia in 1963 — the same year my father graduated and I celebrated by second birthday — to become a part of the North Grounds expansion.

My thanks to the UVA team for letting me stay here. It was an interesting and unexpected coincidence to spend a night in The Duke House, the night before the Duke University football team played UVA at nearby Scott Stadium.  Sometimes, life comes full circle and it was nice to be back spending a night in my hometown.

Next Post: My pre-clinical trial health screening at Barringer Hall, a part of the original UVA hospital and the old maternity ward — where I was born just a few years ago.