We R the Cure

Seeking Cures and Cheating Destiny

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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.



A Parent’s Dream And Fear: Preparing Your Child For Living With Diabetes While Attending College

By Lauri Savage
Part 1 of a 2-part story

Drew Savage at JMU in 2008

My Son, Drew, arrived at JMU in 2008 ready to balance his studies and his T1D.

In the fall of 2008, we headed from Richmond to Harrisonburg, just over 2 hours in driving distance.  When considering the emotional distance, it seemed much farther.

Since it had been many years since I went off to college, I truly forgot how traumatic this experience could be.  I tried to prepare myself on two levels.  First, as the mother of an only child to whom I am very close, I knew that part would be hard.  Secondly, as the parent of a young adult with type 1 diabetes, I was very scared about managing a disease during college life.

Here is what I did initially to be ready:

  • We went by the James Madison University student health center to let them know about my son’s diabetes.  I found out about the rights of students with disabilities at college.  We had several months of diabetes supplies ready.
  • I talked to the resident advisor  (RA) on our first day.  I am sad to say that the level of cooperation and support you get depends on the specific RA.  I wondered about training my son’s roommate to administer glucagon in an emergency.  We did not get an opportunity to check that out, but I know others have had success.

The transition from parenting your child with diabetes to setting a young adult loose at college is huge.

Parents of a diabetic youth handle the transfer of responsibility in different ways.  We had about 16 years of experience in our family, and we made a conscious effort to let our son assume management of his diabetes in a gradual way.  I am proud to say that he had never taken a “holiday” from diabetes, tested his blood glucose frequently, and had been giving his own insulin for several years.

In preparing for my son’s life with diabetes at college, here is the smartest thing I did:  I made sure to have the cell phone number of his roommate.  Unfortunately, I would need that phone number much sooner than I imagined. Check back here next week for Part II of my story.

Online resources for Students with Diabetes:

College Students With Diabetes

A Guide to Succeed in School

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Behind The Scenes Of A Closed Loop AP Clinical Trial; Guest Blogger Abby Bayer Shares Her Personal Story

Abby Bayer and I have never met, but we have a lot in common. We’re both PWDs, DOCs and T1Ds. Say what?

Abby Bayer smiles during her Closed Loop AP clinical trial in Boston last December.

As I enter my second month as the “CEO and Chief-Bottle-Washer” at We R the Cure.com, I am now a new member of the Diabetes Online Community (DOC), basically a growing family of advocates and social media amateurs who blog, share personal stories and strive to help themselves and other PWDs ( Persons With Diabetes) — not MWDs (Mice With Diabetes). In the DOC, connecting with fellow T1Ds who are traveling the same “highs and lows” road is the “Glue-cose” that holds us all together. Forgive me, I couldn’t resist the corny joke.

Anyhow, back to my new friend, Abby. She recently blogged a two-part series on her participation in an Artificial Pancreas Closed Loop Clinical Trial in Boston. Abby is a Cure Seeker. She is giving her time, her talent and — her blood — in search of real solutions. That’s why I started this blog — to showcase the Cure Seekers and report on the human clinical trials that need more humans, according to Dr. Desmond Schatz, Medical Director of the Diabetes Center of Excellence at the University of Florida.  Together, We R the Cure, but we need more trial participants like Abby.

Read Abby’s two-part story on the SixUntilMe blog. You Rock Abby!

Editor’s Note: My sincere thanks and appreciation go to Abby and Kerri Morrone Sparling, the founder/editor of SixUntilMe — the amazingly awesome blog for Type 1Ds and the people who know us and love us. Thanks for giving me permission to share SUM editorial content on my blog!  Ironically, Abby and I were both diagnosed with Type 1 diabetes in 1998.

Next Post — We R the Cure bloggers will report on the news coming from the JDRF Research Summit held Feb. 18 in Bethesda, MD. Here’s a hint: Dr. Schatz wants to cure humans with T1D not just mice.

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News Update: Yale Study Reports On A Drug That May “Preemptively” Delay T1D Development

Scientists at Yale University recently found a mechanism of action by which Teplizumab, an anti-CD3 antibody may be working as an immune therapy for Type 1 diabetes.

Teplizumab, the drug used in the study, is thought to work by shutting off a part of the immune system most responsible for attacking these insulin-producing cells and generating long-term immunoregulation to control this misguided autoimmune response. While previous trials tested whether Teplizumab might preserve insulin production in people recently diagnosed with T1D, researchers are now also studying whether the drug might preemptively prevent or delay the development of T1D in at-risk individuals.  One such study is being conducted by the National Institutes of Health’s Type 1 Diabetes TrialNet.

Currently, once T1D starts to develop, there’s no intervention developed to stop it. The immune system slowly and inevitably kills the pancreatic beta cells that produce insulin, a hormone that enables people to get energy from food. As a result, people with T1D have to test their blood sugar and give themselves insulin (with injections or an insulin pump) multiple times every day in order to stay alive. What’s more, reversing T1D remains an elusive and complicated challenge, requiring restoration of the insulin-producing cells that were destroyed, as well as solutions to turn off the misguided immune system attack on insulin-producing cells.

The latest findings about Teplizumab are reported in the current issue of the journal Science Translational Medicine

News Release courtesy of JDRF.org.

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JDRF Diabetes Research Summit Feb. 18 In Bethesda MD: Are You Going?

T1D Blue Finger Graphic

We are Number 1. JDRF Hosts 2012 Research Summit Feb. 18

Don’t miss this unique opportunity for education and dialogue with leading experts & prominent researchers in the type 1 diabetes field!

In addition to having a variety of influential authors and researchers share their expertise, there will also be a robust exhibit hall featuring the latest in cutting edge technology, resources and research.

When:   Saturday, February 18, 2012

Where:   Bethesda North Marriott Hotel & Conference Center
Located near the White Flint Metro Station (Red Line)
9:00 am – 4:00 pm

Registration and Vendor Exhibits open at 9am. Admission is FREE (with suggested donation), though seating is limited.  Check the summit agenda and register here.

If you have specific questions regarding the Summit, please email jdrfcapitol@gmail.com.

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Until There’s a Real Cure For Type 1 Diabetes, the Artificial Pancreas is the Techno-Cure

Graphic of Insulin Pump and CGM

Graphic showing Artificial Pancreas "closed loop" system currently being developed by leading researchers. Photo courtesy of The AP Project

For the 3 million Americans who are living with Type 1 diabetes, the artificial pancreas project represents a Cure. Well, more like a Techno-Cure. AP technologies have the potential to be the most revolutionary treatment since the discovery of insulin 90 years ago! In future posts here, we’re going to exam the AP in detail and some of the basic questions that keep all of us awake at night:

  • How much money will it take to develop these treatments and cures?
  • The human body is a complex machine created by a higher authority than man. Can we ever truly understand autoimmune disorders?
  • Will there ever be a true “cure” for diabetes? Or I am just playing the part of Indiana Jones, traveling on a life-long journey or quest for “The Holy Grail?”

We R the Cure is dedicated to providing information, breaking news and key opinions to this discussion. Want to know more about the AP trials at U.Va? Here’s a comprehensive video from a “patient’s view” of the artificial pancreas project being conducted at the University of Virginia and its peer institutions in the United States and overseas.

As the search continues — amazingly, it’s been 42 years since the JDRF was founded (1970) by parents who were not satisfied with the pace of scientific research — we push for prevention, treatments and technology solutions that will produce tighter glucose control and reduce the serious life-threatening complications. We look healthy on the outside. But we’re dying on the inside. In the coming weeks, we’ll start answering those nagging questions about research dollars and the search for Cures. Your comments and questions are always welcome here!

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U.Va.’s Artificial Pancreas Trials Producing “Real-World” Success for Diabetes Patients

The development of an artificial pancreas is coming. This year, U.Va. researchers expect to begin a new phase of human clinical trials testing the closed-loop system outside of a hospital setting. A test in the real world with real Type 1D people like me.

The UVA Artificial Pancreas Research Team

A blurry photo of a very "sharp" group of docs. Dr. Boris Kovatchev, center-right, Director of U.Va.'s Center for Diabetes Technology, and members of the Artificial Pancreas research team, gather with me in the summer of 2010. These are my favorite Wahoos!

This past December I was driving to Charlottesville for a new health screening,  tied to my third clinical trial in the AP research project, when I got the classic “Good News, Bad News” phone call from U.Va. The Bad News: My new trial — “Pramlintide Combined with Model Predictive Control Algorithm” with Open and Closed Loop randomization — was being postponed. I would not be needed today.

The Good News: Successful AP clinical trials in outpatient settings in Europe were paving the way for next step trials in the United States! So instead of wasting my blood, sweat and tears in another inpatient trial,  I am on the short list — fingers and toes are still crossed —  of participants who will participate in unique, closely monitored trials using the Droid-like artificial pancreas device! (Hit the link below to read article and hear audio interview with U.Va.’s lead researcher Dr. Boris Kovatchev, courtesy of U.Va’s Health System News Service.)

These studies are the next critical step in ensuring that an artificial pancreas is safe and effective for all patients and will meet all FDA requirements. More than 300 Members of Congress, including Virginia Senators Mark Warner and Jim Webb, and organizations representing 6,000 clinical endocrinologists, and thousands of academic researchers and medical professionals urged the FDA to move forward at the end of 2011.

Hopefully, we’re now on a faster track that leads to rapid commercial development of the real deal — not just a fancy laboratory device. It’s time to climb the next mountain. And soon, very soon, the more than 3 million Americans who are living and coping with this chronic disease — and cheating destiny daily — will be able to show off their digital life-saving AP devices and say, “Diabetes, There’s an App for that!”

U.Va.’s Artificial Pancreas a Real-World Success for Diabetes Patients.