We R the Cure

Seeking Cures and Cheating Destiny


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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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UVA Artificial Pancreas Team Receives $3.4 Million Grant; Technology Aims To Transform The Lives Of Type 1 Diabetics

A high-tech project at the Center for Diabetes Technology at UVa to turn an ordinary smart phone into an artificial pancreas that could transform the lives of people with type 1 diabetes has received a $3.4 million grant from the National Institutes of Health.

The Center For Diabetes Technology Team at UVA

The Center for Diabetes Technology Team at UVA is part of a worldwide Artificial Pancreas Consortium working to bring a safe and high-tech Closed Loop System to Americans with Type 1 diabetes in the next few years!

The money will fund a new network approach to artificial pancreas design using distributed computing between local and Cloud systems that will allow real-time adjustment of insulin delivery based on the individual’s needs. The grant will also fund three clinical trials at the University of Virginia and at Stanford University that will advance the project toward its final goal of offering people with type 1 diabetes – in which the body does not produce enough insulin – an automated way to monitor and regulate their blood sugar.

“This project approaches the artificial pancreas not as a single device but as a network of local and global services working seamlessly together towards the optimal control of diabetes,” said Boris Kovatchev, PhD, of the University of Virginia School of Medicine and the Center for Diabetes Technology.

The artificial pancreas was developed at the School of Medicine by a team of researchers led by Kovatchev, the director of the UVA Center for Diabetes Technology, and Patrick Keith-Hynes, PhD. The device consists of a reconfigured smart phone running advanced algorithms, linked wirelessly with a blood glucose monitor and an insulin pump, and communicating with Internet services in real time.

The system’s developers intend for it to monitor and regulate blood-sugar levels automatically, report to a remote-monitoring site and link the user with assistance via telemedicine as needed. This would save users from having to stick their fingers to check their glucose levels multiple times a day and eliminate the need for countless syringes to inject insulin manually. The physicians on the team – Bruce Buckingham, MD, of Stanford, and UVA’s Stacey Anderson, MD, and Sue Brown, MD – have tested the artificial pancreas system in successful outpatient trials in Virginia, California and in Europe.

University of Virginia Press Release


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Show Me The Money: Diabetes Research Funds Continue To Fall Well Short Of A Cure

Ever since I started my blog, I wanted to “republish” this small section of James Hirsch’s fair and honest book, “Cheating Destiny: Living with Diabetes.”

Hirsch writes about the many researchers, scientists, doctors and advocates who are still working on “conquering” but maybe not “curing” diabetes. Of course, money is one issue. Ronald Kahn of the Joslin Diabetes Center in Boston has tried to calculate the government’s neglect of diabetes research funding. More than 20 million Americans have diabetes, Type 1 and 2, which translates to about 7 to 8 percent of the total U.S. population.

Dr. Denise Faustman

Dr. Denise Faustman, a veteran diabetes researcher, made Wall Street Journal Headlines in 2006 in a story titled: “Confirming Hope on Diabetes: A Controversial Therapy for Diabetes Is Verified.” Her story is included in Hirsch’s book.

Consider these stats about our country’s lack of public support for a growing diabetic epidemic.

  • Public spending on diabetes is about $50 per diabetic, based on 2007 financial data.
  • The average cost of care per diabetic — what you spend on medicine, equipment, etc — is between $10,000 and $20,000.
  • 32 percent of the nation’s Medicare budget is spent on people with diabetes.
  • Since 1980, the NIH budget for diabetes has increased by 240 percent to $1.1 billion.
  • NIH total expenditures have grown by 261 percent, thus the percentage allocated for diabetes has declined as the number of diabetics has doubled.
  • In 2004, the NIH spent about $68 for each diabetic compared to $16,936 for each patient with West Nile virus.

“Our investment in the future, the future of all these people, amounts to less than half of one percent of what we’re spending on the disease,” Kahn told Hirsch, adding that even the tire industry spends at least 3 percent of its sales on research. “It’s simply not enough. I can’t say that if we invested ten times as much we’d move ten times faster, but we would move faster.”

So why would the West Nile Virus receive more funds than Diabetes, you may ask? Hirsch contends that the perception of insulin as a kind of cure — or at least a potent remedy — has made other diseases seem to be a larger threat. Infectious diseases, in general, receive priority for government funding. That makes sense to me because government’s job is to protect us against epidemics, but it does not address the obvious lack of public funding for Type 1 diabetes, an auto immune disease that also strikes suddenly,  without warning and is largely unpreventable. I could not “guard” against the Type 1 diabetes bug bite, although researchers believe that genetic and environmental factors do contribute to a person’s chances.

In today’s recessionary economic climate, I understand that taxpayers can not support every worthwhile disorder or disease. A few years ago, well about 40 years to be exact, President Richard Nixon declared a “war” on cancer and urged Americans to spend money to defeat it. Although some cancers are beatable today, I don’t think anyone would say we’ve won that war? And 40 years ago a group of angry and fired up parents formed JDRF, to raise money for better research and finding a cure for their children suffering with Type 1 diabetes.

Today, hoping for a cure is still a good thing. May is my anniversary month — I’m living 14 years with this uninvited house guest. I still believe things will get better in the near future for me and the 3 million Americans living with Type 1. However, hoping for a cure may also be unhealthy for the person living with diabetes.

As Hirsch, also a Type 1 diabetic and father of a child with the disease, correctly concludes: “If I believed (a cure) was ‘around the corner’ or five years away or even possible, it would have been easy to lapse into bad habits. Why go through the daily demands, frustrations and indignities of tight glucose management when a medical miracle would soon deliver me from my burdens? Diabetes is too taxing, too unforgiving, to hold out hope. It’s the ultimate paradox of the disease: if you have it, you have to live your life as if you’ll never be cured.”


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Is Type 1 Cure Research Funding Focused Enough? A New Report Worth Reading

Until yesterday, I had never heard of the JDCA, the Juvenile Diabetes Cure Alliance, in my 14 years of living with Type 1D and volunteering in my local diabetes community.

Diabetes Advocates Push Congress For Federal Research Funds

Chris Schutt, his son, Ned, American Idol Singer Elliott Yamin and I advocate for sustained federal research funds with U.S. Rep. Eric Cantor, R-VA, in 2009.

Now I have. This month, the JDCA has introduced its latest report , “Is Type 1 Cure Research Funding Focused Enough?”

The report takes a look at a very important issue relating to cure research. Are the organizations being too broad when it comes to outlining plans for a type 1 diabetes cure and when funding projects? Based on JDCA’s research and the fact that there is no cure on the horizon, the non-profit’s analysis suggests that this is the case. The JDCA report says, “Without clearly defined goals, the non-profits are funding a wide array of research projects. As a result, a lot of money goes into efforts that are not working to deliver a Practical Cure for type 1 diabetes.  This diverts resources from those projects that are working towards a specified cure goal that could help people now living with the disease.”

If you’re living with this chronic disease, you wanted a cure YESTERDAY. It’s been over 40 years since a group of parents founded the JDRF at their kitchen table and yet We R still seeking a Cure.

In order to improve the quality of life for Type 1Ds, it’s important to listen and gather as much relevant information as possible. We must keep asking the researchers, organizations and manufacturers “When?” When we will see real progress. We must push them to be smarter and more targeted with a limited amount of dollars because We R the Cure. We R doing this for ourselves and the generations to come.

The JDCA is a self-funded non-profit that aims to educate donors and prompt transparency in the charitable organizations that raise money to support research.  JDCA says it is an independent analyst of the type 1 diabetes charitable universe and brings a business-like perspective to focus research toward a Practical Cure.  Their mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.