We R the Cure

Seeking Cures and Cheating Destiny


1 Comment

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

Advertisements


Leave a comment

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.


Leave a comment

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.


1 Comment

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

BETHESDA, MD — 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 recent JDRF Type 1 Diabetes Research Summit on Feb. 18. Let’s roll the audio tape:

JDRF Type 1 Research Summit

Juan Dominguez-Bendala, Ph. D, of the Diabetes Research Institute, opened the JDRF Summit with a keynote presentation on "The Hope and Promise of Stem Cells and Cell Therapies." Photo courtesy of JDRF Capitol Chapter.

“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.

Dr. Schatz and his audience enjoyed the perfect timing, and I cheered, too.  I could not believe my “good fortune.”  I knew the JDRF Summit would be a unique opportunity for education and dialogue with prominent researchers in the Type 1 diabetes field. I also knew it would be a great chance to talk with friends and allies gathered in Bethesda. However, I was NOT expecting to get a free endorsement for “We R The Cure” from one of the researchers! (Of course, I’m joking. For the record — I did not pay him; However, I did thank Dr. Schatz later for pushing for more trial participants).

In the coming days, we’ll post some specific comments and follow up observations from what we learned at the Summit. In the meantime, here’s a link to all of the Summit presentations — without any edits — from the amazing professionals and lay people who spoke at the Summit.

A special thanks to Summit Presenting Sponsor, Johnson & Johnson, and the Capitol Chapter of JDRF for putting together such an amazing and educational event for us. Thank You!  Read more about the Summit from the Diabetes Online Community (DOC) on Twitter, using #jdrfsummit.


2 Comments

Discovery of Insulin: It’s not a cure, but it sure beats death

This blog is dedicated to a future of high tech products, better treatment solutions and, one day, real cures for persons living with autoimmune disorders like Type 1 diabetes. Before we can look forward, we need to stop and pay our respect to two Canadians and their laboratory dogs!

This month marks the 90th anniversary of the discovery of insulin by Canadian scientists Fred Banting and Charles Best.

As a person with Type 1 diabetes, I owe these men and many other scientists my life. Actually, about 4 million people living today are in debt to these trailblazers.

Fred Banting and Charles Best Discover Insulin

Canadian Scientists Fred Banting and Charles Best Discovered Insulin in 1922. Photo courtesy University of Toronto.

Although it is true — Insulin is not a cure for Type 1 diabetes — imagine the starvation deaths  suffered before the discovery of insulin in 1922. In fact, my favorite diabetes book, “Cheating Destiny,” writer James S. Hirsch tells the horror stories of children and adults living a “disgusting and painful” death from diabetes. In the early 1900s, doctors knew that sugar worsened the condition of diabetic patients and that the most effective treatment was to put the patients on very strict diets where sugar intake was limited.  At best, this treatment would buy patients a few extra years, but it never saved them. In some cases, the diets even caused patients to die of starvation.

“The Greek physician Aretaeus of Cappadocia offered the first accurate account of diabetes in the first century A.D., noting the distinctively gruesome fashion in which some patients withered away. He called their demise, the ‘melting down of the flesh and limbs into urine. Life is disgusting and painful.’ Diabetes’ signature symptom was polyuria or excessive urine. When blood sugar levels rise, the body draws water from its tissues to purge the sugar through its urine.”

This is why children and adults may lose 50% or more of their body weight in the initial weeks of the autoimmune disorder hitting. Your body is, basically, releasing excess sugar AND the food you need to stay alive. In my case, I lost 16-17 pounds in about 4 to 6 weeks before I finally dragged myself to Dr. G. V. Puster for my diagnosis! I made many rushed trips — running at full speed — to get to a bath room. And hoping that I would not wet my pants. It was a hit-or-miss race. Ugh. Fun times.

So, let’s celebrate the discovery of insulin. One of the most revolutionary moments in medicine. Though it took some time to work out proper dosages and to develop manufacturing processes to make enough insulin of consistent strength and purity, the introduction of insulin seemed literally like a miracle. One year the disease was an automatic death sentence; the next, people — even children — had hopes of living full and productive lives even with the disease. Wellcome's insulin Ad in 1923

Now, we stand on the water’s edge. Waiting for the next miracle. If you want to participate in miracles, then you need to get involved in a human clinical trial. Miracles like the artificial pancreas, beta cell regeneration and smart insulin are sitting on the horizon. So don’t wait on the shoreline. Jump in. Become a “research dog.”

Coming up next week, I’ll post details on how to find and enroll in a clinical trial.


Leave a comment

Hello World! Cures Needed For Auto Immune Diseases

Yes, my “unemployed” pancreas and I are headed back to the University of Virginia in 2012 to participate in the Artificial Pancreas human clinical trials supported by the National Institutes of Health (NIH). Since we’re both sitting around and not working today, it seems like we ought to get active again and donate our parts to science.

Soon I will go to Charlottesville for my health screening and prepare for my hospital admittance. I will let you know when I go back in. I will be in the hospital for about 24 hours — two or three separate overnight visits. I am really excited about participating in Phase III of the landmark trial. We can’t get an artificial pancreas or the technology to market without some human guinea pigs. That’s me. Oink, Oink.

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 diseases such as type 1 diabetes and certain forms of cancer — such as liver 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.

What is a clinical trial?

Although there are many definitions of clinical trials, they are generally considered to be biomedical or health-related research studies in human beings that follow a pre-defined protocol. ClinicalTrials.gov includes both interventional and observational types of studies. Interventional studies are those in which the research subjects are assigned by the investigator to a treatment or other intervention, and their outcomes are measured. Observational studies are those in which individuals are observed and their outcomes are measured by the investigators.

Why participate in a clinical trial?

Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.