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.

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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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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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JDRF Research News: Specific Protein May Help Beta Cells Survive in Type 1 Diabetes

JDRF-funded researchers find therapeutic potential of MANF protein to reduce beta cell stress in type 1 diabetes.

Image for Diabetes Advocates

I am a diabetes advocate. We R the Cure is a blog site dedicated to the persons living with Type 1 diabetes and the clincial researchers who are making positive things happen in our journey to a cure.

In the healthy pancreas of someone without type 1 diabetes (T1D), the hormone insulin (essential for turning food into energy) is produced, stored, and released in a normal “factory-like” process within pancreatic beta cells in response to glucose in the diet.

Early in the course of T1D, however, excessive or pathologic stress in beta cells compromises their ability to properly secrete insulin, triggering a cascade of events ultimately contributing to the beta cell death. Over the past several years, JDRF-funded researchers have found evidence that beta cell stress may play a role in the onset of T1D, and are exploring possible ways to stop it from occurring, thus potentially protecting beta cell health and maintaining normal beta cell function.

In April, JDRF-funded researchers in Finland released new findings in the journal CellPress that add another piece to the puzzle of beta cell stress and T1D.

Post comes from News release published at  http://www.jdrf.org.


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Turning Type 1 Diabetes into Type None: I’m wearing biker shorts (Ugh) and riding for a cure

Hello Friends and Supporters of Type 1 Diabetes research!

JDRF Ride to Cure Diabetes

Why do we ride? We ride to raise research funds so that Daniel Majikes, left, has hope for a brighter future and a real cure for Type 1 diabetes. Daniel and I will ride together in Vermont on July 26.

I’m taking part in the JDRF Ride to Cure Diabetes in Vermont this July, along with hundreds of riders from around the world, to raise money for JDRF, the leading global organization funding type 1 diabetes (T1D) research. My training is designed so I can ride up to 100 miles on a bike — I’m not a cyclist but I am a biker with a mission.

So far, I’m up to 29 miles of weekly bike training and heading toward a busy July riding the back roads of Goochland County — which is a beautiful area to ride. As Jackson Browne sings, “Looking at the road rushing under my wheels … Running on Empty … but I’m running on.”

Click here to visit my personal page.

I received my Type 1D diagnosis — from out of nowhere — in May 1998. That is 16 years this May 2014. It’s been a real up-and-down journey since that unfortunate starting line when my fasting blood sugar was 500+ as I sat in the exam room at Chester Family Physicians.

Today, 16 years later, I count only my blessings for all the good things that have happened to me on my journey to a cure. It’s the Type 1D people — Drew, Lauri, Daniel, Linda, Matthew, William, Susan, Fred, Tony, Kevin, Patti, Trish, Shea, Sarah, JP, Liesl, Molly, Mary, Laura, Boris, Danny, Sue, Stacy, Nicole, Kathy, Ned, Chris, Eva, Cecil, Cheryl, Larry, Melanie, Kim, Hillary, Doran, McKenzie, Sandra, Connie, Kailee, Nathan, Tom, Kim, Tiffany, Andrew and all my fellow JDRF volunteers too numerous to list — that’s why we ride.

We do ALL this for each other. We do it for ourselves. We do it for our friends and loved ones. We do it for my aunt Mary Jane, a Joslin Medalist who’s lived with Type 1 Diabetes for 70+ years and is still kicking – despite having both feet amputated due to diabetes complications. And we do it for the next generation of children and adults who have not been diagnosed yet.

Today, I’m making my biggest commitment yet. I have joined Coach Matthew Majikes and the Central Virginia Ride to Cure Diabetes team. Our goal is simple: To train together as a team, enjoy our time together, and cycle up to 100 miles in Burlington, Vermont July 24-27 to raise awareness and dollars for research that will improve the quality of life for children, teens and adults living with this chronic disease.  And one day soon — our efforts will generate a quality of life cure like the Artificial Pancreas and the ultimate goal, a medical cure that reverses or stops Type 1 diabetes in its tracks.

Will you help me on my road to a cure?

JDRF is working every day to fund critical diabetes research. And every dollar I raise helps them continue to bring life-changing therapies from the lab to the community until a cure is found. I’m  entering my second month of training on my bike. Please check back to view my fundraising progress as my Ride weekend approaches.

Can you make a donation of $25, $30 or more today? Your support, both financially and emotionally, is greatly appreciated. Please consider making an online donation today. Thank you. Together, We Are The Cure.

Mike Anderson

Click here to visit my personal page.


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D-Blog Week is back in 2014; Goal is to connect, share our hopes, and change the Diabetes World

For the 5th year in a row, diabetes online writers from all over the world will be participating in a solid week’s worth of informative, educational, and inspirational blog posts. To find out everything you need to know about Diabetes Blog Week, click on the button to the right.

Click on the #Dblogweek buttoin

Diabetes Blog Week — Click to find out more details.

Can you join a blog party that’s already been going on for 5 years?

Yes, I’m going to jump in for the first time ever this week. That’s 7 blog posts in 7 days. OMG.  Let’s get the party started.

Today’s topic: Change the World – Monday 5/12

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Changing the world?

A few years ago, I won’t say how many, a very “Zen” co-worker of mine was fond of quoting inspirational slogans to inspire team members to overcome our every day, routine work challenges. At the time, my personal guru was a very non-Zen spiritual leader named Vince Lombardi, legendary head coach of my Super Bowl champion Green Bay Packers.

Needless to say, we didn’t have a lot in common. Funny thing, two decades later — after spending many days, weeks, months  and years working with volunteers at the local and state level to raise awareness and the critical funds for Type 1 diabetes research — I can admit it: My co-worker was right in sharing his quotes with us. With a shout out to my former colleague, Karl Bren, here’s the quote that fits perfectly with the diabetes online community (DOC) perspective:

“Never believe that a few caring people can’t change the world. For indeed that’s all who ever have. ”
Margaret Mead, The World Ahead: An Anthropologist Anticipates the Future    

So, if the Genie stopped by today and granted me 3 practical — not magical — wishes to change the diabetes world — here’s what I’d want to make happen:

  1. Remove the FDA’s ability to delay or drag its bureaucratic feet — to block cutting-edge insulin pump technology that is being used successfully in Europe.  Bring it to the USA. Now.
  2. Remove roadblocks so we can expand the research and exploration into stem cells and regeneration technology like the efforts now underway in California by ViaCyte. Let’s “wake up our unemployed pancreas” and bring it back to full employment producing beta cells and the insulin we need ON Command. (A related side wish — Bring back the missing limbs, bring sight back to the blind, and restore full health to the persons who’ve lived with Type 1 diabetes for decades and lost a few rounds with the killer. This one’s for you, Aunt Mary Jane!)
  3. Ask everyone to stop blogging, tweeting, snap chatting and every social media form of expression for 1 year — and go visit their next-door neighbor, siblings, family members, strangers and find ways to improve your own piece of the world. What’s your passion? What problems plague your community? If you have diabetes, cancer or any life-threatening disease — see if it makes sense  for you to volunteer for a human clinical trial. Jump in and encourage others to do the same. We need more trials so we can stop curing Mice With Diabetes and focus on Persons With Diabetes.

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!”

It’s Diabetes Blog Week, and this entry is for the “Change the World” topic.  For more on Diabetes Blog Week, including participants and topics, click on the respective links.  It’s not too late to join in the fun – jump in now!