We R the Cure

Seeking Cures and Cheating Destiny


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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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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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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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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 JDRF walk team

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


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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

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


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Diabetes Technology: What Patients Really Want — The Video


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Why Do We Need Type 1 Research? Meet Molly: She Is A Diabetes Advocate Who Almost Became A Diabetes Statistic

I want you to meet Molly. She’s a CDE and clinical nurse trial coordinator at the Center for Diabetes Technology at the University of Virginia School Of Medicine. She’s a type 1 herself who works with the famous Dr. Boris Kovatchev running cutting-edge Artificial Pancreas trials.

UVA Nurse Molly McElwee Malloy

Molly McElwee Malloy

Earlier this year, before you ” met ” Molly — she almost became a statistic. Molly almost died in the early morning hours from a “SH event,” a Severe Hypoglycemic seizure that required EMS intervention and help from a fast-acting spouse. Instead of me trying to retell the story, here’s a link to Molly finally telling her story in her own words in DiabetesMine this August. If you or someone you know lives with Type 1 diabetes, you must read this. Of course, you’ve probably had this happen. My wife has called EMS for me but I have avoided a seizure or trip to the ER.

Here’s a life-and-death detail of Type 1 diabetes:  1 in 20 people, an estimated 2-4 percent and 6 percent in patients younger than 40 years old, will die from severe hypoglycemia.  That’s having a low blood sugar that produces seizures, coma and death. Of the estimated 3 million people in the U.S. with type 1 diabetes, that’s approximately 150,000 people. That’s like wiping out Chattanooga, Tenn. or Rockford, Ill. — wiping them right off the map.

The prevention of a ” hypo event” is a deadly serious issue for T1Ds who strive for tight blood glucose control. That’s the catch-22: The better your control is and the lower your A1cs number is, the better chance you have of avoiding the serious, medical consequences of diabetes ( amputation, heart attack, stokes, and blindness to name a few).

The better your control, however, the higher the likelihood of low-blood sugar events (hypoglycemia).  Wearing Insulin pumps and continuous glucose monitors (CGMs) all serve as valuable tools for T1Ds in the quest for tight control. However, reading Molly’s near-fatal “bedtime story” makes it clear to me: even the best informed and compliant PWDs ( persons with diabetes) will experience severe lows and their insulin pumps will continue to infuse insulin until the patient or an attending EMS tech turns it off manually.

That’s where the Artificial Pancreas and its Safety Supervision System can provide real technology solutions. And that’s why the AP must be available and soon.

Severe Hypoglycemia Event Data

Molly’s Severe Hypoglycemia Event.

The figure ( reprinted with permission from Molly) shows the course of her near-death experience and how  the system would have intervened. Sixty minutes before the ” severe hypo” event the safety system would have alerted the patient and stopped insulin. This alert — think of it as your home’s monitoring system — can send a signal to the patient. And if the patient is sleeping or in what I call a ” diabetes fog — unaware of the pending crash.” it could send an alert to a caregiver or spouse via the system’s remote monitoring capability.

I first met Molly in the summer of 2010 when I enrolled in my first AP clinical trial at UVA. Molly, and her trials colleague Mary, are bright, engaging and positive people. Thanks to Molly and Mary, I’ve enjoyed every minute I’ve spent in the UVA trials — as an in-patient and out-patient. And even though Molly reminds me, gleefully, that her alma mater James Madison beat my alma mater, Virginia Tech, in a football game recently in Blacksburg — I can’t imagine going back to UVA in the future and not seeing her smiling face.

Molly gets ” the need” for more clinical trials and why the Artificial Pancreas is so critical to our long-term health. For all T1Ds who wake up at 2 or 3 AM to treat a low blood sugar and sit in the kitchen wondering what happens the next time our sugar drops below 40,  we know why the AP and better technology must be available in the United States. The safety shutoff is available to insulin pump and CGM wearers NOW — in Great Britain. It’s time for the United States to stop leading from behind and move to the front on diabetes technology and research.

Our lives — and Molly’s life — hang in the balance.