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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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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Matchmakers for Clinical Trials: Corengi Launches Free “eHarmony” Search App For Diabetes Research

It’s time to admit my deepest, darkest secret:  I frequently visit an online dating service. I search the site and view the long list of prospects late at night when my wife and family are sleeping.

Unfortunately, it is almost impossible to find my perfect match, and what do I really know about my government-sponsored online dating service? In the morning, after a night of searching, I wake up tired and unsatisfied. However, when it comes to finding a match, I am totally committed to the search.

OK. Relax. And don’t call my wife. I’m talking about diabetes human trials and the lack of a user-friendly search application to make this less cumbersome for individuals who wish to find a match. Thankfully, this may all change soon thanks to the efforts of Ryan Luce and his company, Corengi, which provides a Clinical Options Research Engine to match open trials — for all types of chronic diseases — with the patients willing to participate in the search for a cure.

“That’s interesting that you used that term because we also see the need for an ‘eharmony’ search application,” Ryan Luce, the president and founder of Corengi, said during a recent telephone call. “Our goal is to simplify and improve the search process and to build a large database of qualified participants.” Ryan said the new online effort is a demonstration project focused on Type 2 diabetes with some financial support coming from an NIH grant and other investment capital.

Ryan said Corengi is committed to building a comprehensive, free, and open interactive platform that will allow stakeholders within the clinical trials community (investigators, site personnel, sponsors, and disease advocates) to engage with potential enrollees and educate them about specific clinical trials.

Photo of Corengi's Ryan Luce

Ryan Luce is president and founder of Corengi, a Washington-based digital firm

At this point, the Corengi App connects persons with Type 2 diabetes with open clinical trials — and it is quicker and easier to use than searching the government’s Clinicaltrials.org site. Ryan told me the interactive database has more than 400 Type 2 trials today and is growing daily. Offering a Type 1 diabetes search application, the one that I care about,  will take a little longer to develop because there are more complex data variables to account for than in Type 2 trials ( i.e.  does the patient wear an insulin pump, do they wear a CGM, when were they diagnosed, what is their A1c, etc.)

It is awesome to see that Corengi is close to launching a Type 1 clinical trials search engine. The need for this product is clear. If you make a diabetes online search or view my twitter page on any given day, you’ll see a lot of great trials are happening across the world. When you read these stories closer, however, you’ll also see a common theme: Researchers need more humans to participate in Type 1 and Type 2 diabetes clinical trials.

Finally, Ryan says the good news for Type 1 diabetics is that Corengi is not the only business pursuing this solution. “There is an entire industry growing up around this online recruitment idea, and we intend to be a part of the solution,” Ryan said.

Ryan spent most of 2000-2009 working for healthcare technology company NexCura, which was acquired by Thomson Reuters in 2005 and then sold to US Oncology at the end of 2009. NexCura has educational tools that are embedded on a variety of websites, including several of the most prominent advocacy groups. As Director of Product Development, he developed completely new product lines in clinical trial recruitment, market research, and physician messaging. Ryan earned his B.S. in Chemistry from Duke University in 1994 and his Ph.D. in Bio-Organic Chemistry from the University of Washington in 1999.

Ryan sounds like he’s got the technical and business savvy to make this application a success. As a clinical trial participant, I wish him continued success, and when he gets the Type 1 App ready, I’ll partner with him to post it here on WeRtheCure.com for everyone to check out. Thanks Ryan for using technology to produce better solutions and, hopefully, a cure for persons living with diabetes. Together, We R the Cure.


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2013 Blogging Year In Review: Thanks For Visiting We R The Cure

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,200 times in 2013. If it were a cable car, it would take about 37 trips to carry that many people.

Click here to see the complete report.


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Clinical Studies Are Recruiting for Participants; We R the Cure — Is It Your Time?

A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge.

Before leaving UVa and giving back the AP, I pose with a few of the team members who watched over me and conducted the outpatient trial. L to R: my nurse, Crystal Leathers, computer engineer Benton MIze, and Stacey Anderson, MD.

Before leaving UVa and giving back the AP, I pose with a few of the team members who watched over me and conducted the outpatient trial. L to R: my nurse, Crystal Leathers, computer engineer Benton Mize, and Stacey Anderson, MD.

There are two main types of clinical studies: clinical trials and observational studies. ClinicalTrials.gov includes both interventional and observational studies.

Searching for a Type 1 Diabetes Clinical Trial? Check out the current list of trials in the United States.  Searching for a Type 2 diabetes clinical trial?  Click this link.


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Diabetes Technology: What Patients Really Want — The Video