We R the Cure

Seeking Cures and Cheating Destiny


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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.

Aunt MJ2_Birthday

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.

Artificial Pancreas Closed Loop System


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Project Nightlight: Taking another trip to Sugarland, trying to make dreams come true for T1Ds

Starting last week, I enrolled in a new clinical trial at the Center for Diabetes Technology at UVA. It has a cool code name: Project Nightlight.

The study purpose: to see if an investigational type of technology ( an integrated Artificial Pancreas system using the newest InControl diabetes management platform from TypeZero Technologies) can help control blood glucose levels and can be successfully used and supervised remotely in a non-hospital setting like — My HOME!!!

Studies like this one at UVA are happening in 2016 and 2017 — to demonstrate to the FDA that an AP with a smart brain in a smartphone can go “home” with your average T1D ( who is already smart, cool and well-managed) and deliver a safe and revolutionary tech solution for BG control. Thereby, removing some of the 24 hours, 7 days, 365 days per year attention that is normally required to keep a “normal BG range.”

Week 1: Study participants traveled to Charlottesville to change out their own insulin pump for the study insulin pump system — Accu Check Spirit Combo. Getting used to a new pump, learning how-to-change and prime your pump, searching for little tiny insulin bubbles in a long, long inset tube — is not a thrill. The 4 of us did it together with a certified diabetes educator and only used our “first names” and our study ID number to maintain our anonymity. Oops, until I just posted this?

Week 2: I had to do homework. Homework? Yes. Really. Participants were asked to answer 7 survey questionnaires about life with T1D. I took my position on the couch and answered all those detailed questions around — “how BIG of a pain in the butt” is Type 1 diabetes. I used the same answer — T1D is a chronic disease that is sometimes invisible to others — to all of the survey questions. It stinks. But you learn to manage and keep trying for a better A1c and less deviation between your Highs and your Lows.

This week, we reconvene at UVA to learn “what” is “InControl platform” and how we’ll use it to run “open loop” control in the daytime and ” closed loop” — while I sleep. We’ll go home at COB with the trial system ON and try to pretend it’s just another day in Sugarland! Stay tuned for more updates here  www.werthecure.com  or follow me on Facebook and Twitter.  Together, we are the cure.  — Mike


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Seeking Cures, Cheating Destiny: “It’s Time to Wake Up and Smell the Cure — We R the Cure”

“We are the world, we are the children, We are the ones who make a brighter day, So let’s start giving. There’s a choice we’re making, We’re saving our own lives. It’s true we’ll make a better day, Just you and me … We R the Cure!”  

Mike Anderson Ride to Cure Type 1 Diabetes Photo

Yes, I’m riding again to cure diabetes with JDRF. Training has started. Our Central Virginia Chapter Team is riding Oct. 31, 2015  — Halloween Saturday — in Nashville, TN.

The signs are obvious: It’s time for a blog Comeback. Easy to say, hard to do. However, blogging is more about therapy and communication than about setting social media records. I am a proud member of the #DOC — Diabetes Online Community, and I am an advocate for better health care through research and technology. I am sorry I’ve been a dark page recently, but the good news is I am not a diabetes statistic today. I am one in 3 million Americans — an achiever battling against the odds and celebrating each day without complications.

Last week, I had the privilege of meeting Sebastien Sasseville for dinner in Richmond. I will post by recap of that chance encounter. In a nutshell, Sebastien is amazing and inspiring. Covering nearly 7500 km from coast to coast and completing the equivalent of 180 back-to-back marathons, Team Novo Nordisk triathlete Sebastien Sasseville ended his epic run across Canada in Vancouver, British Columbia on World Diabetes Day in November 2014. Sebastien ran his final kilometers into historic Stanley Park, reaching the shores of the Pacific Ocean after nine months on the road battling rain, sleet, ice and snow, and more than 30,000 feet of climbing through the Canadian Rockies. Stay tuned for my story on Sebastien.

In the past few months, I’ve also done a limited outpatient clinical trial with my friends at the University of Virginia’s Center for Diabetes Technology (CDT).  I see more trials coming on the near horizon and I’m hoping to participate  with Dr. Boris Kovatchev and his awesome team at UVA. Stay tuned for more updates on UVA CDT trials and news from across the globe.

In closing,  I’d like to reprint an excellent excerpt from Kerri Sparling’s book — “Balancing Diabetes.” It summarizes the paradox of living with #T1D — healthy looking on the outside, dying on the inside. If you don’t know Kerri Sparling — you gotta check her out online. She’s amazing.

Finding Balance and Moving Forward

“It’s a delicate balance, this one between “I’m sick” and “I’m fine.” … On an average day, diabetes falls in the “annoying but tolerable” category. … But on some days, diabetes falls into the “eff you and the effing islet you refused to ride in on” category.

“You seem fine.”  I am fine. I think? I have a chronic illness — a disease — that compromises the function of my pancreas to the point where I need synthetic insulin daily, and even with dedicated management, I may see serious and debilitating complications in my lifetime. That’s part of the dance — feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of EVERY DAY.”

“Diabetes means living life on that seesaw. Some days you are way up high and other days have you almost in the dirt, both literally and figuratively. .. I can’t let myself hate it because it is a part of me.  A part that I work so hard to maintain.” Thanks Kerri. Your book is an inspiration.


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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.

Princeton Researchers Use Lasers to Measure Blood Sugars

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.”


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Is anyone using Joslin HypoMap App? Are self-management technologies future of diabetes care?

An open question to my peers in the #DOC : I’m wondering if anyone is using the Joslin HypoMap software App?  Is any of the cost covered by healthcare insurance? What are the early results from users?

diagram of the HypoMap App developed by Glooko and Joslin Diabetes Center.

Diagram of the HypoMap App developed by Glooko and Joslin Diabetes Center.

 

The app is included in this must read update about translational technologies from the Joslin Diabetes Center :

JITT doesn’t plan to introduce any new technology to the market themselves. “We are not technology,” says Harry Mitchell, executive director of JITT. “We are the know-how. We are the clinical solutions that strive to make technology better to improve the lives of people with diabetes.”  A nationwide shortage of endocrinologists, diabetes nurse educators, and adult diabetes care centers has burdened the healthcare system and impacted timely patient care. Howard Wolpert, M.D., director of JITT, believes the future of medicine, particularly diabetes care, must begin with self-management technologies.

DiaTribe Report of HypoMap.

http://blog.joslin.org/2014/09/molding-the-future-of-diabetes-technology-with-the-joslin-institute-for-technology-translation/#more-5365


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ViaCyte begins clinical trial of diabetes treatment derived from stem cells; 40 people are needed for the trial

ViaCyte is developing a drug delivery system that enables implanted pancreatic progenitor cells to survive and differentiate into functioning insulin-producing islet cells.

Graphic showing ViaCyte encapsulated cell therapy for Type 1 diabetes clinical trials

View of ViaCyte’s encapsulated cell therapy packet. Stem cells will produce insulin and other hormones to better control blood glucose levels in persons with Type 1 diabetes.

UC San Diego said Tuesday it is hosting the Phase 1 trial in partnership with San Diego-based ViaCyte. The biotech company grows islet cells from human embryonic stem cells. The cells are placed into a semi-permeable envelope and implanted into the patient. In animals, the stem cells mature into islet cells, successfully controlling blood sugar.

The treatment could provide what the company calls a virtual cure for Type 1 diabetes, which is caused by a lack of insulin-producing “islet” cells in the pancreas. About 40 people are being sought for the trial.  The number to call for more information on the diabetes clinical trial is 858-657-7039.

I encourage you to read this article — This is why We R the Cure.  We need more public and private dollars for cutting-edge high tech research and we need more PWDs ( Persons With Diabetes) to enroll in clinical trials and encourage others to do the same.

http://www.utsandiego.com/news/2014/sep/09/viacyte-clinical-diabetes-stem-cells/

 


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

CVA Ride to Cure Team Lines Up for Tune Up

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.

Mike Anderson Ride to Cure Type 1 Diabetes Photo

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.

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

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