miles.lindholtz.net

One brave boy deals with Diabetes

2008-07-11T11:10:00.000-07:00

June, 2009
Saturday, June 13 was the kickoff for Family Teams planning to raise money for the Juvenile Diabetes Research Foundation via the Walk to Cure Diabetes on September 26. What caught our attention was Executive Director Molly Naylor describing where JDRF has been sending our money. A one million dollar grant has been given to further the research on Smart Insulin - which is injected but remains inactive until it detects high blood sugar at which time it activates, releases enough insulin to restore a target range, and then becomes inactive again. Meanwhile, Miles has completed is best-ever year of school and is ready for a fun summer before 7th grade.

March, 2009: "You are what we call "one of a thousand points of light" This is what President George H.W. Bush said to Miles upon hearing of Miles' raising over $10,000 for JDRF last year. Miles and I had gone to the Bush library at Texas A&M to hear a lecture and meet the President.

November, 2008

• Two common cancer drugs have been shown to both prevent and reverse type 1 diabetes in a mouse model of the disease, according to research conducted at the University of California, San Francisco. The drugs – imatinib (marketed as Gleevec) and sunitinib (marketed as Sutent) – were found to put type 1 diabetes into remission in 80 percent of the test mice and work permanently in 80 percent of those that go into remission.

•THE HOUSTON WALK TO CURE DIABETES is history. For our team it was our tenth walk, as we mark ten years living with diabetes, (thus the "10" logo on our team shirts) and our team (the largest we've ever had) brought in over $10,000! This pic is of Miles with his skating buddy, Zach.

October, 2008

• SMILES FOR MILES was an awesome and wonderful evening with lots of good food, fun, music, comedy and magic, raffles and auctions, and when it was over, more than $8000 in donations.

September, 2008
• Common plastic linked to Diabetes
• We're recovering from Hurricane Ike. See my blog "On the Tracks" for more reports.
• We are 16 days away from SMILES FOR MILES!

August, 2008
• The school year begins at a new school. Miles is at Creekwood Middle School. His general health is considerably improved over last year in almost every way. No doubt part of the improvement is due to the change in schools and part of it is due to a wonderful summer in which he literally vacationed coast to coast (Golden gate to Cape Cod). But there can also be no question that prayer has played a part in his improved health.

July, 2008
• Miles and his sister were at Camp Rainbow this week. Camp Rainbow is a diabetes day camp experience sponsored by the American Diabetes Association. Kids like Miles can’t go to most overnight camps because of their medical conditions, but Camp Rainbow is fully staffed by medical professionals and volunteers from Texas Medical Center. Miles began when he was only 4, and he has 2 more years before he hits 13, after which he can only go as a Junior counselor. ElenaClaire went for years as junior counselor, then as junior medical staff. This year she was the senior medical staff for the 12 and 13 year old group. Even though she’s only finished one year of college, she was the only one in that particular team of volunteers that has been to Camp Rainbow before, and besides that, of course, she’s been helping to care for a diabetic brother for 10 years. I call that the equivalent of a doctoral degree in pediatric diabetic care.

• As we get ready for a family vacation to California, we're also preparing for SMILES FOR MILES, our annual fundraising event for JDRF. We're doing shirts again, this time in three colors, and here's the design:

That's the front on the left, designed like a football jersey, the "10" representing 10 years living with diabetes, 10 years walking for a cure. The back, on the right, will have up to 20 sponsors listed underneath the website and dates.

June, 2008
• Miles is no longer an elementary school kid. Miles graduated from the 5th grade and said good bye to Bear Branch, anticipating the 6th grade at Creekwood Middle School. Thank you Bear Branch. Thank you Lisa Philbin, his school nurse for the past 6 years.
May, 2008

• Here's Miles' image from the promotional materials from Accu-Chek's Spirit insulin pump.

April, 2008
• Miles is doing better in almost every measurable and intuitional respect. He is growing in height and weight; we are seeing healthier glucose numbers; emotionally and attitudinally he is improving; his schoolwork seems to be moving forward in a positive way; he is growing in relational skills, and he is excited about the approach of summer (obviously) and beginning middle school. And we're halfway through Harry Potter and the Order of the Phoenix, our nighttime reading, which we're loving.
• As we move through April, we are beginning to plan SMILES FOR MILES 2008, the cornerstone of our annual funraiser for JDRF. This will be our tenth year raising money to find a cure for this disease. Our targeted goal is $10,000.
March, 2008
• 3/14/08 Yesterday we received a rough mix copy of the DVD produced by Accu-Chek, which features some eight or nine pump users (including Miles) talking about their experiences with the insulin pump. The production crew did an outstanding job.
February, 2008
• Miles and his Mom travelled from Kingwood TX to Indianapolis, IN as the guests of Disetronic, the manufacturers of his insulin pump. For several years, largely unknown to us, Miles has been "the face" of Disetronic pump users - an icon representing each user, reminding employees that everything they do on the job impacts the quality of life of the end user. On this trip Alicia and Miles got to personally thank many of those employees. They were also filmed for a DVD coming out this spring, telling the story of how the pump has improved his life. Read more about Miles and his pump here and see the pictures from their trip here.
• Miles was featured on KFBK Radio's "Webslinger" on January 17. (Listen to the spot)
• Mongenic diabetes - read the story of a little girl, diagnosed with diabetes at one month of age, who is now living an insulin-free life for the first time in her life.

January, 2008
• In early January, Miles took a meeting with Congressman Ted Poe (Pictures below). The Congressman has been very supportive of JDRF. This meeting was just to say "Thank You" and to keep him aware of issues of concern to diabetic children and adults and their families.

2008-07-03T18:59:00.000-07:00

So you’re a parent of a diabetic child. We are so sorry. We understand, though. Better than we want to understand. We’ve been where you are standing right now. And we want to help you and to encourage you.

The help is yours in whatever way possible. If you need to talk about what you and the child and your family are going through, write to us. If you want advice, ask us. If you’d feel better talking, ask for our phone number in an email, telling us just a little about you and your child.

The main thing we want to encourage you with is what our Doctor said when Miles was diagnosed. We met him in the hospital and he was Miles’ endo from then until his retirement. He said “Whatever I teach you now to care for Miles will be obsolete in 5 years. What you are doing in 5 years will be obsolete 5 years after that. And it’s highly likely that by the time Miles graduates from High School, we’ll have found a cure – either that or something very close to a cure. That’s the direction the research is heading.”

Miles will graduate in the spring of 2015. Our Doctor’s first 2 predictions proved pretty accurate. His third prediction (the one involving a cure) has energized our care for Miles, has energized our prayers, has energized our fund-raising for the Juvenile Diabetes Research Foundation. Our goal is for Miles to be a healthy grandfather. Our efforts now aim for that goal.

Miles is going to be OK. We believe that, and we believe it for your child as well. It’s tough watching them struggle with the illness. I (Rick) can remember little of the first 12-18 months after diagnosis. It’s a very stressful thing learning to live with diabetes – we call it the unwelcome new member of the family. That helps us to separate it from Miles.

The greatest help we got in those early years was participation in a support group for parents of diabetic children. A lot of parents sort of adopt the attitude that they can get through this thing on their own. I admire them if it is true. We, however, needed a circle of friends who understood exactly what we were facing – none of the other friends we had could really “get it”. We needed other parents who could offer advice specific to what we were facing. And we needed parents of diabetic kids who weren’t afraid to care for Miles once in a while so we could get out alone. For several years we had no one who was brave enough to watch a diabetic child for an evening; for several more we had maybe one friend who would do that.

So we really do encourage you: find some other parents who deal with the same challenges.

One last encouragement: call your nearest JDRF office and connect with people there. You’ll find a terrific group of people invested in helping to find a cure for this illness. In 1999, less than a year after Miles’ diagnosis, we started raising money for JDRF’s efforts to find a cure. We began doing the “Walk to Cure Diabetes” every year – 2008 will be our tenth year. We started an event called “SMILES FOR MILES” in 2006 to augment our fund raising. We volunteer every year at the Houston Gala fundraiser. The cause of bringing healing to our child (and yours) is one about which we are passionate.

Our next addition to the site will be a list of ideas on how to get started in raising money for JDRF. After that we'll write a page on how to get a support group going in your area, if there is not one already.

SMILES FOR MILES report

2007-09-17T06:55:00.000-07:00

Last week was so much work preparing for SMILES FOR MILES. But in the end it was a smashing evening, more than doubling the money raised for diabetes reseaarch. We had a great turnout, all three bands did a fine job, comedian Chuck Montgomery was terrific, and the raffles were well supported. We had a live auction of two items: a signed Houston Texans football helmet, and a Christopher Radko baseball-themed ornament signed by Roger Clemons.

In the end, $4000 was raised - add to that the $1000 in sponsorships on the back of the T shirt and $1100 raised by the Creekwood Middle School kids selling paper sneakers last week with our help, and we are standing at over $6000 - with more than a month before the walk. That is awesome!

The Shirt - 2007

2007-09-13T13:19:00.000-07:00

SMILES FOR MILES shirts are in, and we're delighted with the look! It comes in 4 colors, and in S, M, L, and XL.

We'd love to send you one. Here's how:

• Make a donation to JDRF - either online, or by mailing a check to us (ask for the address here). We are asking you for a $25 donation to receive a shirt, but it can be as much as you wish.

• Send us a separate check made out to us, for $5 to cover shipping. Sorry, we can't swallow the shipping costs for everyone who asks for a shirt.

A Cure - using patient's own stem cells

2007-04-15T20:36:00.000-07:00

From the Times London:

Diabetics using stem-cell therapy have been able to stop taking insulin injections for the first time, after their bodies started to produce the hormone naturally again.
In a breakthrough trial, 15 young patients with newly diagnosed type 1 diabetes were given drugs to suppress their immune systems followed by transfusions of stem cells drawn from their own blood.
The results show that insulin-dependent diabetics can be freed from reliance on needles by an injection of their own stem cells. The therapy could signal a revolution in the treatment of the condition, which affects more than 300,000 Britons. Read More...

Miles' new Challenge

2007-02-25T11:26:00.000-08:00

Newest Information at the bottom...
In late February, 2007, Miles was diagnosed with a condition called eosinophilic duodenitis. This condition causes chronic and acute abdominal pain. Those without highly technical interests can skip the following italicized portions.

The duodenum is the first loop of the intestinal tract after the stomach. "-itis" indicates inflammation. Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cells that stain when exposed to the acidic dye eosin. Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Eosinophils are most commonly associated with allergic diseases and parasite infections. This condition is most common in south Texas for unknown reasons. Eosinophils are found naturally in the lower gastrointestinal tract. Whn present further up in the duodenum, stomach, or esophagus, they cause eosinophilic disorders, of which duodenitis is one.

Because it is believed that allergies play a role here, the treatment of the allergies is hoped to be the trick to treating the condition. If Singulair does not work, prednisone is the next step, which tends to drive blood glucose numbers crazy. Your prayers appreciated.

March, 2007 - Miles is diagnosed with Gastroparesis. Ordinarily, strong muscular contractions propel food on its long and convoluted journey through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all, preventing your stomach from emptying properly. This can interfere with digestion, cause nausea and vomiting, and play havoc with blood glucose levels and nutrition.

April, 2007 - Miles has been on prednisone for 2 weeks. As anticipated, blood glucose numbers are going wild. He's probably nearly doubled his insulin intake and it is still not giving us control. And it does not seem to help either the eosinophilia or the gastroparesis. Meanwhile we are checking his blood glucose every 2-3 hours day and night. We are wearing thin.

May 2007 - Thank you God that April is over. Steroids nearly killed us all and we're still recovering. It is not yet clear what the steroids accomplished or where we stand now. We just need to get away from the school schedule and then see where we are.

September 2007 - Miles had a great summer, but the fall brought further complications. We're taking it one day at a time and praying for healing, while seeking the best medical advice we can find.

January 2008 - Late last year we began to see dramatic improvements in Miles' health and emotions. The improvements are no doubt the result of prayer, but also of new medical advances. After our wonderful GI doctor said "I got nothin'", he added, "Maybe you need to see one of my colleagues. Maybe a new pair of eyes will see something I've been missing". The new Doctor sure enough came up with a prescription suggestion. At about the same time, Miles' clinical depression began to respond to 2 new medications. The cumulative result was improvement that was incremental, but over 2 months' time has made significant changes. Everything is not perfect, but it's so, so much better than before.

A Big Sister's Love

2007-01-08T13:55:00.000-08:00

I don't think I can express in words how much I love my little brother Miles. He is my best friend, makes me laugh, takes care of me, and always forgives me. It's so painful to watch him go through all of the daily trials living with Juvenile Diabetes. I don't think I can remember one day when diabetes didn't come through and interfere with our plans, and Miles goes through so much because of it. It's so heartbreaking to watch him go through so much suffering on a daily basis. He never really feels well, and ever since he was diagnosed I have been the designated cheer-er upper whenever he's feeling down.

I am a senior in high school this year, and in May Miles will have to endure sitting through a really, really, really long graduation ceremony. I have no doubt in my mind that he will simply sit there and play with his game boy. However, I want Miles there for me for the rest of my life. I want him to be sitting next to me when we have to endure sitting through my grandchildren's graduation ceremony. (Who knows, he may still be playing his game boy!) So it is urgent that we find a cure for diabetes, to ensure that Miles can live a long and healthy life with me.

What About Rob?

2006-10-30T14:19:00.000-08:00

Rob Loar has been Miles' hero ever since they met. Miles was still a tiny boy and Rob may have been the first person he ever met with diabetes. I still remember sitting in the restaurant now called Skeeters, watching Rob handle his own blood checks and insulin injections, when Miles was still years away from handling anything like that.

Rob got an insulin pump about 6 months before Miles did, and I remember Miles at age 3 1/2 calling Rob once we got the definite word that we had been approved for pump therapy. "Hi Wob. Guess what? I'm gonna get a pump. Just wike you. I wuv you."

In the fall of 2006, Rob (then a Senior at TCU) was sending applications out for medical school. Part of his application essay reads in part, When I was twelve years old, my family met a toddler named Miles, who was diagnosed with diabetes at infancy. During the last decade, our families have become very close because of the bond we share in dealing with diabetes. Miles' parents frequently ask for my advice and trust me to take care of their of their son's illness. I've watched Miles go through several hardships in dealing with his disease, but I've also seen him grow and mature dramatically.

By the time I was fourteen I decided to pursue a career in medicine, specifically pediatric endocrinology. Children like Miles are my inspiration and motivation. There are thousands of kids like Miles, who do not deserve diabetes and the difficulties that come along with it. I hope to make a contribution to improving the treatment of diabetes and the quality of life of affected children.

What a great guy! Rob is now in his first year of Medical School in San Antonio.

Report from the Walk 2006

2006-10-14T14:57:00.000-07:00

THANK YOU TO EVERYONE who came to SMILES FOR MILES on September 25, 2006! We had an awesome time and we hope you did too! A wonderful turnout of loving and generous people enjoyed music, magic and comedy and helped us raise over $2000 on the way to our goal of $3000. We think we'll make and exceed that goal!

CONGRATULATIONS to out top door prize winners: Robert Dillard and Stacey Swihovek, who won the JDRF green Polarfleece jackets; and Jodi Houseworth, who won the earrings donated by Thomas Markle Jewelers of Kingwood. We've already heard from people who want to see this event again next year and are even offering to help make it even better than this year!

Here's a picture from the walk, with more to come later.

Our 8th walk was sort of a bittersweet experience. We had the largest team we've ever had - 24 walkers, mostly the terrific students from Creekwood Middle School. We had the most successful funraising ever - over $5500! (That was a typo - funraising instead of fund-raising - but I decided to leave it in, because it really is fun!)

FLASH UPDATE: Our walk total now exceeds $6600!

But Miles woke up with high numbers and large ketones, and felt pretty miserable most of the morning. At first we wondered if he would be able to even go; then thought he'd have to wait while everyone else walked. Finally we asked for and were given the exclusive use of one of the golf carts designated "Weary Walker Wagons" and Miles and Alicia rode the whole route.

When we got to the finish line we encouraged Miles to get up and walk the final 15 feet of the walk. He couldn't even do that. That's when Alicia lost it.

That's why we do the walk every year - to find a cure for this boy and millions of others.

Thank you for your support. A cure is within reach.

The Walk 2006

2006-06-28T14:53:00.000-07:00

We're revving our engines for The Walk to Cure Diabetes 2006, which will happen in Houston on Saturday, October 14 at Reliant Park. Very shortly, we'll have a link here which you can use to go directly to the JDRF site to make a secure donation to JDRF as part of the "Miles for Miles" team or register as a walker on our team.

Last year "Miles for Miles" raised $3500. This year we expect to raise over $4000.

GREAT NEWS! Thrivent Financial for Lutherans has agreed to make a contribution of $1000 when we reach the $3000 level.

Encapsulated islets (May 2006)

2006-05-30T11:29:00.000-07:00

NOVOCELL, JDRF ANNOUNCE PARTNERSHIP TO CLINICALLY TEST ENCAPSULATED HUMAN ISLETS

Protocol Could Advance Islet Replacement Therapies for Patients with Type 1 Diabetes

New York, NY - May 30, 2006 – The Juvenile Diabetes Research Foundation announced today that it has established a partnership with Novocell, Inc. an Irvine, California-based, biotechnology company, to support an on-going proof of principle phase I/II human clinical trial for Novocell’s polyethylene glycol encapsulation of insulin-producing islets.

According to Richard A. Insel, MD, Executive Vice President of Research at JDRF, the Novocell partnership is an exciting opportunity to clinically evaluate one of the potential therapies to cure type 1 diabetes. “The Novocell encapsulation procedure potentially provides an approach to avoid the use of chronic immunosuppressive drugs in the islet transplant setting. We are pleased to support the clinical translation of this research that has shown promise in animal research.”

Islet transplantation has shown success over the past few years in significantly improving the day-to-day life of adult patients with uncontrolled diabetes or hypoglycemic unawareness, reversing their diabetes for a period of time and lowering their insulin requirements for an extended period. But the immunosuppressive drugs needed to suppress both the alloimmune (foreign tissue rejection) and autoimmune reactions to the transplanted islets can have significant side effects, making them inappropriate for children with diabetes.

Novocell’s encapsulation technology uniformly coats donated pancreatic islets with a thin layer of biocompatible material. This coating is believed to enable implanted cells to survive subcutaneously and control glucose levels in patients with type 1 diabetes, resulting in near normal hemoglobin A1c levels without the need for life-long immunosuppression.

“Our encapsulation technology will be an essential element to implanted islet cells for the treatment of diabetes,” commented Alan Lewis, Ph.D. president and CEO of Novocell. “We expect to demonstrate the safety and efficacy of encapsulated islet cells in patients through this trial.”

The partnership is the latest in JDRF’s innovative Industry Discovery and Development Partnership Program, in which the world’s leading charitable funder of research for type 1 diabetes teams with biotechnology companies to develop drugs, therapies, and treatments for diabetes. The program supports companies – often in collaboration with academic researchers –to develop or test, in preclinical models or early-stage clinical trials, novel therapeutic approaches for diagnosis, prevention or treatment of type 1 diabetes or its complications.
The program includes two types of partnerships. Discovery Partnerships are intended to support early stage proof-of-concept programs, which identify mechanisms of potential therapeutics, demonstrate pre-clinical efficacy, or pilot clinical assessment of a potential therapeutic approach. Development Partnerships provide support for promising mid-stage research programs, including the advancement of a pre-clinical stage program to clinical trials, or advanced Phase II/III clinical testing of promising therapeutics.

About JDRF
JDRF was founded in 1970 by the parents of children with juvenile diabetes - a disease that strikes children suddenly, makes them insulin dependent for life, and carries the constant threat of devastating complications. Since inception, JDRF has provided more than $900 million to diabetes research worldwide. More than 80 percent of JDRF's expenditures directly support research and education about research. JDRF's mission is constant: to find a cure for diabetes and its complications through the support of research.

About Novocell, Inc.
Novocell, Inc. is a stem cell engineering company with research operations in Irvine and San Diego, Calif. and Athens, Ga., dedicated to creating, delivering and commercializing cell and drug therapies for diabetes and other chronic diseases. Novocell is the first company to efficiently engineer human embryonic stem cells into definitive endoderm, the gatekeeper cells that differentiate into many other cells, tissues and organs. Novocell has three primary technologies: stem cell-directed lineage, encapsulation and drug discovery. The company was founded in 1999 and merged with CyThera and BresaGen in 2004. For more information, visit http://www.novocell.com/.

Novocell’s goal is to develop a renewable source of specialized cells that can be used to treat chronic diseases. To achieve this goal, Novocell is uniquely positioned to exploit human stem cell engineered product opportunities using its proprietary cell encapsulation technology. Combined with Novocell's expertise in cell transplantation, these technologies will allow large numbers of patients to be implanted with disease curing cells without the use of immunosuppression. Beginning with the treatment of diabetes, Novocell’s technology platform has wide application to a range of diseases and conditions where the only effective treatment will be the replacement of non-functional cells.

_________________________________________

April 28, 2006 - Today was Miles' "Super Kids' Day" (Field Day) at Bear Branch Elementary School - but Miles decided to skip that fun day in favor of something else that is less fun but very important.

Today Miles was one of a group of insulin-dependent diabetic children who met with Senator Kay Bailey Hutchison. The purpose of these meetings is simple - the children want to say "Promise to remember me" - when you are making decisions and voting on appropriations that affect the health of those with Type 1 Diabetes.

Miles has had such meetings with 2 congressmen and both of Texas' Senators - Sen. Hutchison and Sen. John Cornyn.

Pump and Monitor

2006-04-15T17:53:00.000-07:00

Approval of Integrated Insulin Pump and Continuous Glucose System a Significant Step Towards Artificial Pancreas Technology

(See also this article from the Washington Post (pdf format) with diagrams and photos)

New York, NY, April 13, 2006 — The Juvenile Diabetes Research Foundation (JDRF) said today that the federal government’s approval of an insulin pump that also provides real-time, continuous glucose monitoring is a significant step on the path to the development of an artificial pancreas, with the potential to significantly improve diabetes care and lower the risk of complications.

JDRF, the world’s leading charitable funder of research on type 1 diabetes and its complications, also praised the Food & Drug Administration’s quick action in approving the device as critical to expediting the development of artificial pancreas technologies—a major research priority for JDRF.

The new device (the MiniMed Paradigm REAL-Time Insulin Pump and Continuous Glucose Monitoring System) was just approved by the Food and Drug Administration. It’s the first integrated system for people with diabetes combining an insulin pump with a continuous glucose monitor.

“This represents another important step forward in diabetes treatment. By combining a sensor and a pump, people with diabetes will be able to take relatively immediate action to adjust their glucose levels,” said Aaron Kowalski, PhD, Director of Strategic Research Projects at JDRF. “Research clearly shows that the risks associated with diabetes complications are often directly tied to close control. With technological advancements, diabetes patients will be able to maintain healthier glucose levels and, as a result, prevent or delay devastating complications associated with diabetes.”

He noted that JDRF is involved in a major program to fund research to illustrate the potential clinical (and, as a result, economic benefits) of continuous glucose monitors and closed-loop artificial pancreas systems.According to Dr. Kowalski, research continues to show that current diabetes technology is inadequate. Some studies, he said, have found that even those patients who intensively manage their disease – measuring their glucose an average of nine times a day – spent less than 30 percent of the day in normal glucose range. The rest of the time, their glucose was either too high (which can lead to complications including eye, heart, kidney, and nerve disease), or too low (which can cause seizures, comas, and death). But studies have also found that patients with access to real-time glucose levels spent 26 percent more time in normal glucose range, and have statistically significant improvements in HbA1c levels, an important measure of longer-term glucose control.

“By improving the clinical outcomes of people with diabetes, and preventing serious and costly complications, technologies involving insulin pumps and continuous glucose monitoring have the potential to greatly benefit the U.S. health care system,” explained Cynthia Rice, Director of New Technology Access at JDRF. She noted that total diabetes-related costs exceed $132 billion a year, and that 32 percent of Medicare expenditures are spent on people with diabetes.

Nearly 21 million Americans have diabetes, including some 3 million with type 1 diabetes, and one in three children will someday develop the disease. Diabetes is the leading cause of kidney failure and adult-onset blindness, increases the risk of heart attack deaths by two-to-four times, and leads to more than 80,000 amputations each year.

Insulin pumps enable diabetes patients to take insulin on both a pre-programmed and as-needed basis throughout the day and night. Continuous glucose sensors read blood sugar levels on a minute-by-minute basis using a small sensor that is inserted under the skin, which transmits data to a hand-held device. Some devices not only provide actual glucose readings, but can tell a patient whether their glucose level is trending upwards or downwards, allowing them to continually adjust their medication, diet and exercise to prevent high and low glucose levels.

Dr. Kowalski noted that, ultimately, a true artificial pancreas – or closed-loop glucose testing and insulin delivery system – will enable a person with diabetes to maintain normal glucose levels by providing the right amount of insulin at the right time, just as the pancreas does in non-diabetic individuals. Closed-loop technology will provide patients and their doctors with far more information about their daily glucose fluctuations and trends, and allow for far tighter control. The artificial pancreas will test glucose approximately 1,400 times a day (compared with a current average of two tests for the typical diabetes patient), and make insulin dosing information based on that real-time information. The system just approved by the FDA is an ‘open-loop’ system in which patients still make the decisions on insulin dosing based on sensor readings and a confirmatory fingerstick.

“The development of an artificial pancreas has been one of JDRF’s top research goals, and we are cautiously optimistic about the potential benefit of new technologies,” said Dr. Kowalski. “The technological future of diabetes care is coming much sooner than people had imagined, even just a few years ago.”

Continuous Monitor Approved

2006-03-27T15:46:00.000-08:00

update! Click here... (4/23/06 Washington Post)

Monday March 27, 2:43 pm ET
Technology Could Revolutionize Diabetes Care and Management

NEW YORK, March 27 -- The Juvenile Diabetes Research Foundation (JDRF), the world's leading charitable supporter of research on Type 1 diabetes and its complications, said today that the federal government's approval of another medical device that continuously monitors glucose is an important step in the development of an artificial pancreas -- a major research priority for JDRF -- and has the potential to greatly improve the quality of diabetes care and lower the risk of complications such as blindness, heart attack, kidney failure, and amputation.

"Continuous glucose sensors represent a giant leap forward in care for people with diabetes, allowing them to monitor their glucose levels and precisely dose their insulin based on that real-time information," said Aaron Kowalski, PhD, Director of Strategic Research Projects at JDRF. "This technology should greatly improve glycemic control -- which research has shown to be the key to reducing or even eliminating both short and long-term complications of diabetes."
The new device, called the STS Continuous Glucose Monitoring System, from San Diego-based DexCom, Inc., was approved by the Food and Drug Administration on Friday for use in people with diabetes. It's the latest product in what is expected to become a competitive market for continuous glucose monitoring products.

"By helping people with diabetes prevent serious and costly complications, continuous glucose sensors can greatly improve the health care system," said Cynthia Rice, Director of New Technology Access at JDRF. She noted that total diabetes-related costs exceed $132 billion a year, and 32 percent of Medicare expenditures are spent on people with diabetes. Nearly 21 million Americans have diabetes and one in three children will someday develop the disease. Diabetes is the leading cause of kidney failure and adult-onset blindness, increases the risk of heart attack deaths by two-to-four times, and leads to more than 80,000 amputations each year.

Dr. Kowalski noted that research continues to confirm that current diabetes technology is inadequate. Some studies, he said, have found that even those patients who were intensively managing their disease -- measuring their glucose an average of nine times a day -- spent less than 30 percent of the day in normal glucose range. The rest of the time their glucose was either too high (which can cause eye, heart, kidney, and nerve disease), or too low (which can cause seizures, comas, and death). But studies have also found that patients using continuous glucose sensors spent 26 percent more time in normal glucose range, and have statistically significant improvements in HbA1c levels, an important measure of longer-term glucose control.

Monitors such as these are the keys to the eventual development of a closed-loop glucose testing and insulin delivery system, or an "artificial pancreas." Continuous glucose sensors read glucose levels on a minute-by- minute basis using a small sensor that is inserted under the skin, which transmits data to a hand-held device. These devices not only provide actual glucose readings, but can tell a patient whether their glucose level is trending upwards or downwards, allowing them to continually adjust their medication, diet and exercise to prevent high and low glucose levels.

Closed loop technology will provide patients and their doctors with far more information about their daily glucose fluctuations and trends, and allow for far tighter control. Patients who aggressively manage their diabetes typically test their glucose up to eight times a day, and provide insulin injections based on that information. The artificial pancreas will test glucose approximately 1,400 times a day, and make insulin dosing information based on that real-time information.

"The development of an artificial pancreas has been one of JDRF's top research goals, and we are cautiously optimistic that these new products will be as successful and beneficial to people with diabetes as we hope," added Dr. Kowalski. "The next critical steps are for Medicare and private sector insurers to provide reimbursement for these technologies."

JDRF was founded in 1970 by the parents of children with juvenile diabetes -- a disease that strikes children suddenly, makes them insulin dependent for life, and carries the constant threat of devastating complications. Since inception, JDRF has provided more than $900 million to diabetes research worldwide. More than 80 percent of JDRF's expenditures directly support research and education about research. JDRF's mission is constant: to find a cure for diabetes and its complications through the support of research. For more information about JDRF please visit http://www.jdrf.org/.

Basics for Grownups

2006-03-15T11:32:00.000-08:00

With a diabetic child, we keep track of vast amounts of information related to our son's health.

We track his blood glucose some 7-10 times a day to make sure he doesn't run too high or too low for too long.

We track his intake of carbohydrates - every meal and every single snack - because his insulin dosing is based on carbohydrates consumed. (We have to track whether those carbs are fast simple carbs or slower complex carbs. For faster carbs we underdose because the blood glucose boost might be gone before the insulin has peaked.)

We track his insulin dosing.

We also track the presence of ketones in his blood, a complication that can happen - but let's set that aside for the moment.

So - three things to keep track of.

For a person without diabetes, the interplay between Blood glucose and insulin secretion in relation to carb consumption is all handled by the pancreas - seamlessly and constantly.

Like driving a car: you've got three tasks there as well:

Steering. Accelerating. Braking.

And it's all seamless and constant. You're the driver.

But for a diabetic, the three tasks are not continuous and they are handled by three different "drivers".

Blood glucose is read by a glucometer.

Insulin Dosing is handled via needle injection or insulin pump.

And carb consumption is tracked by careful observation and recording of every bite or meal.

So imagine your car has three people in the front seat. One steers, one accelerates and the third brakes.

And all of them are blindfolded. But it's OK. Each one can take the blindfold off for a minute or so, 7-10 times a day.

THAT is what it's like.

Basics

2006-02-21T19:33:00.000-08:00

(We often speak at Elementary schools or in other settings where we need to give people a basic understanding of how diabetes works. This is what we tell them.)

Your body is like an engine.

It needs fuel to operate well.

The right fuel lets your body grow and become strong.

The fuel your body uses is food. That's why it's important to eat good, healthy food.

But just like everybody else, the cells of your body are locked. That's so that germs can't attack the cells of your body and make you sick.

If you don't have the key to unlock your cells, all the nutrition from the good food you eat simply passes through your body. And even though you are eating food, you won't get any nutrition and you will starve. Without a key to unlock your cells, you will starve to death.

Fortunately your body makes the key that unlocks your cells so that all the nutrition from that good food and get in and make you strong and healthy.

This key that your body makes is called insulin. It is made in a part of your body called the pancreas.

Be glad that your body makes insulin and gives you exactly the right amount that you need.

For people who have Type 1 Diabetes, something went wrong in their body and it quit making insulin. So there's no key to unlock their cells and let the nutrition in. If they are going to stay alive they are going to need to get insulin from somewhere outside of their body.

Maybe they get that insulin in a shot;

or maybe they get it from an insulin pump.

Diabetics are just like you: they need insulin. But their body doesn't make their own insulin any more, so they have to get it from outside.

Diabetes isn't like a cold or the flu: you can't catch it from someone else.

Right now there is no cure for diabetes. Insulin is not a cure; it just keeps diabetics alive. But we're working hard with the Juvenile Diabetes Research Foundation to help find a cure. Someday we think they'll find a cure. Maybe soon. Maybe you'll be in college or be married, and you'll be watching the news on television and you'll hear them say "Important medical news today: scientists have discovered a cure for diabetes".

When you hear that, think of Miles. He'll be smiling.

Camp Rainbow

2006-02-20T09:06:00.000-08:00

Miles and ElenaClaire are regulars at Camp Rainbow. Sponsored by the American Diabetes Association, Camp Rainbow is a day camp for diabetic children and their siblings.
Because of his medical care needs, Miles would never be able to go to camp without one of his parents (and where's the fun in that?) But Camp Rainbow is fully staffed by doctors and nurses who understand his needs. What's more, unlike school, Miles is not the only kid with diabetes. Nearly every kid at camp needs blood glucose checks and insulin dosing just like him.
With her interest in nursing and medical care, ElenaClaire serves as a counselor at Camp Rainbow. She enjoys working with the very young campers (kindergartners and first graders).

Letter from ElenaClaire (2003)

2006-02-17T15:58:00.000-08:00

Hello! My name is ElenaClaire Lindholtz, and I am writing to you on behalf of my brother Miles.

Miles has Type 1 Diabetes, and was diagnosed a week or so after his second birthday. He is insulin-dependent, which means he receives insulin in the form of many shots per day.
Most people produce this vital chemical naturally, but Miles is not one of those people. If you take yourself, your family members and five friends, then add up all the shots they have had so far and ever will have, Miles has already had that many shots and more.

Thankfully, Miles received an insulin pump to dose him more effectively. Keep in mind though that insulin is not a cure to diabetes, but a medicine to keep Miles alive each day.

All of Miles’ life he has had to be dosed with insulin for any food that he eats, and his tiny fingers get pricked seven to ten times a day so that we may accurately dose him for the food that he eats.

Miles cannot have any babysitters except for myself, his older sister, or another parent of a diabetic, and he cannot attend school without visiting the school nurse constantly during the day. He cannot go to a friend’s house, a birthday party or his cub scout meetings without a parent there.

The long term complications of diabetes include kidney disease, heart attack, blindness, amputation, and other life-threatening diseases. On average, diabetes shortens a person’s life span by fifteen years.

Please help me to find a cure for my little brother to brighten his future. You can do that by sponsoring our “Miles for Miles” Team as we participate in the Walk to Cure Diabetes.
This walk is a wonderful cause and I am proud to play a part. Through all of our gifts, one of these years, we won’t walk to find a cure – we’ll walk to celebrate the cure.

Nancy

2006-02-17T15:47:00.000-08:00

link to amazon

Sent less than a month before the President's death
May 18, 2004

Dear Mrs. Reagan,

It is with profound gratitude that I write you today. I just finished reading "Nancy", by Mr. Deaver. Around chapter 3 I had decided to write you to thank you and your husband for your years of service to the people of the United States. Mr. Reagan was the first President I was old enough to vote for. I felt privileged to do so. My husband, Rick, and I respect Mr. Reagan so very much.

After reading chapter five I need to thank you on a deeper, more personal level for speaking out on behalf of the many children struggling with Juvenile Diabetes.

My darling, dimpled son Miles was diagnosed with diabetes at age 24 months. He is now 7 years old and in first grade.

Diabetes is an unwelcome, but permanent, member of our family. I would change places with my son in a nanosecond if I could.

He has endured 8-10 finger sticks with a needle every day (to check his blood glucose level) for over 5 years. He has had more shots than you or I and most of the people we know - combined. We have had to measure, weigh, or count every bite or drink of food Miles has had since diagnosis. Today I completed (and sent to a special committee at his school) paperwork to request he be promoted to second grade. I did not have to send this in because he is not doing well academically. I sent it in because he has exceeded the state allowed absences - almost all diabetes-related.

Until Miles can manage his disease on his own (probably at junior high school age) my husband or I must be at every playdate, school party, birthday party, cub scout meeting, or any other activity he wants to participate in. We do this joyfully, because we love our son, but I know there will come a time when he does not want his mother at his play dates!

I can't begin to count the number of nights I have held a crying, shaking boy in my arms; hand feeding him Cheerios because he cannot hold them in his shaky hands.

Like anyone who cares for a chronically ill person, my "list of whines or woes" could go on and on. And again, I do everything I can for my son with deep love and am grateful that I have him to care for!

I am not writing to elicit sympathy but to help you understand the depth of my gratitude to you for speaking out for a cure and the fact that stem cell research holds the potential for that cure.
My husband and I love God deeply and are pretty conservative. He is a minister. We have researched stem cells and believe there is a conservative, ethical and moral way to use this research to help cure diabetes and many other diseases.

You are in such a unique position of access to reach people who can make a real difference in the hope for a cure for diabetes. Insulin keeps my son alive. It is not a cure. Thank you for using that access! I am enclosing a photo of Miles so that you can see the face of one little boy that you are helping with your calls, letters and face to face conversations.

Lee Iacocca helps out

2006-02-17T15:44:00.000-08:00

New York, NY – August 16, 2004 – Lee Iacocca announced today the launch of “Join Lee Now,” a fundraising initiative to investigate a potential cure for type 1 diabetes. In the 1980s, Lee Iacocca spearheaded a $500 million campaign to reopen the Statue of Liberty and Ellis Island.

Now, 20 years later, he is going back to the American people to raise $11 million to fund a potential cure for type 1 diabetes. Mr. Iacocca will be announcing his new initiative, www.joinleenow.org, on Monday August 16th in New York City. The funds raised as part of this initiative will be separate from the giving the Iacocca Foundation currently contributes to diabetes research and will go directly to support the clinical trials investigating this potential cure at Massachusetts General Hospital (MGH).

“Since the death of my wife in 1983 from the complications of diabetes, I have been driven to do everything I can to fund diabetes research. Last year, one of the researchers we have supported for over a decade cured type 1 diabetes in mice. I’m not going to wait for the government or the pharmaceutical industry to decide to get the human trials going. We need $11 million for these clinical trials now. I’ve given the first million and I’m asking the American people to get behind me and give the rest,” said Lee Iacocca, Chairman of the Iacocca Foundation.

Dr. David Nathan, one of this country’s trial experts, will direct the clinical trials at MGH. Dr Denise Faustman’s initial work, which cured type 1 diabetes in mice, was largely funded by donations from the Iacocca Foundation. MGH is working with the Food and Drug Administration to move this science into human clinical trials. Lee Iacocca and the Iacocca Foundation are working closely with MGH to ensure the $11 million goal is met for the next phase of this research.

“Lee Iacocca and his foundation have made this research possible, beginning at the earliest stages and through our recent breakthrough. The Massachusetts General Hospital and I are honored and excited that he has offered to make this tremendous contribution and commitment to our research,” said Dr. Denise Faustman, Director of the MGH Immunobiology Laboratory.
“In the 1980s, they said that ordinary Americans wouldn’t send checks to refurbish Ellis Island and the Statue of Liberty. They were wrong. I received lots of checks, big and small, from people all over the world and we achieved our goal. We can do it again,” said Lee Iacocca, Chairman of the Iacocca Foundation.

Family Update

2006-02-17T15:36:00.000-08:00

Rick - In his eighth year at Christ the King in Kingwood, serving as Director of Communications, Rick serves in technical ministry oversight, worship, music, drama and evangelism. See Rick's webpage and blog.

Alicia - Being available to care for Miles' health needs limits Alicia's work to part time sales with flexible hours.

ElenaClaire - EC is attending Kingwood College, and also working at Randall's as a certified and licensed Pharmacy Technician.

Miles - in the 6th grade at Creekwood Middle School. Miles is an all-around great guy who loves swimming, bike riding and having fun. He's also the hero of his Mom and Papa for the way he bravely faces down diabetes, eosinophilic duodenitis and gastroparesis.

Airee, the Family Poodle - Her majesty thanks you for your interest and regrets that she cannot personally reply to all correspondence.

Faith, Miles' Pet Leopard Gecko, likes to eat live crickets.

Pixie, ElenaClaire's Hamster, has escaped from her cage 3 times this summer, but was found each time.

Journal
2008 is already very full of memories, with Rick's featured performance in "Annie Get your Gun" and a memorable family trip to California this summer; and a trip by Miles and his Mom to Cape Cod. The boy literally went coast to coast during summer vacation.

Summer 2007 saw the family getting away to the city of Corpus Christi for several days of fun and relaxation.

In June, 2007, Rick was a featured performer in "How to Succeed in Business without really trying". A month earlier, ElenaClaire graduated from Kingwood High.

The highlights of 2006's schedule were our trips to Cape Cod in July, and the Outer Banks of North Carolina for Thanksgiving. Rick and ElenaClaire also had an awesome time on the CTK Adventure trip to Colorado in June 06.

EC was admitted to the National Honor Society in March 05, was honored during National Student Leadership Week in April 05, and was named Colonel (Senior Officer) of the Pep Squad for 2005-2006.

Summer 05 was marked by ElenaClaire's jaw surgery to correct her bite; a wonderful week of VBS at Christ the King; a mini-vacation at some of our favorite places in downtown Houston; Rick and ElenaClaire's mission trip to Arcadia, Florida, ravaged by three hurricanes last year; and Miles' week at Camp Rainbow (the day camp for diabetic kids, sponsored by the American Diabetes Association - with ElenaClaire going along as a counselor).

Our big trip in 2005 was out to southern California in November for Bekah's wedding followed by Thanksgiving with the Cresaps in San Diego.

January 2005 marked Rick and Alicia's 25th anniversary, which occasioned a party and a service of renewal of our vows. Rick surprised Alicia with a self-published book of 25 original works of poetry, and Alicia surprised Rick after the service with a "honeymoon" trip to New Orleans for the next three days - which proved to be, very likely, a trip that will never be repeated, given the destruction to that city. There's a picture of us in New Orleans here.

Summer 2004 provided Alicia and ElenaClaire with the opportunity to travel to San Diego for niece/cousin Jessica's High School graduation, and while there ElenaClaire went surfing. Later, Alicia and ElenaClaire joined 37,000 High School students in Orlando for the National Lutheran Youth Gathering. Rick and Miles joined them on the last day for a family day at the Magic Kingdom, followed by 5 days at the beach on Siesta Key.

Report on the Walk 2004

2006-02-17T15:29:00.000-08:00

CHECK THIS OUT! Miles' Uncle Dave and Aunt Karin walked Miles for Miles at the JDRF walk in southern California on October 23, a day before our walk!

Every fall it starts - our work recruiting walkers and sponsors for the Walk to Cure Diabetes. It's something we look forward to. Already we've taught every child at Bear Branch Elementary about Diabetes as they prepare for two events: The School Walk for Diabetes sponsored by the American Diabetes Association; and "Caps for the Cure" - a day on which every child who brings a donation of $1 or more for JDRF is granted the privilege of wearing their favorite hat or cap to school (which is not usually allowed).

The "Helping Hands Club" at Creekwood Middle School joined us for the third straight year, raising over $900 by selling the same paper sneakers you see at grocery stores and Walgreens. All of the proceeds going to diabetes research.

A dozen walkers were part of the on-site Miles for Miles team, joining the "Kingwood Kids" gang of which we are a part, as well as many thousands of other walkers on October 24 to walk three miles and raise hundreds of thousands of dollars.

The Shirt (2005)

2006-02-17T15:23:00.000-08:00

Order yours here. $5 of the purchase price goes straight to JDRF for research to find a cure.

The Walk 2005

2006-02-17T15:17:00.000-08:00

Some walks make memories. Or great music. Take the Beatles' famous walk on Abbey Road.

Other walks save lives. That's where OUR walk comes in. The JDRF Walk to Cure Diabetes.

So how can a walk save lives?

Walking for JDRF brings us together as a community. Walking gives us a chance to focus for a moment on a disease that 17 million people must focus on every moment of every day… and as we do, we are part of raising millions of dollars for research towards a cure.

Our son Miles is one of 1.7 million Americans – about 10% of all diabetics – who have Type 1 diabetes. This means he is insulin-dependent. His days are filled with finger pricks to check his blood glucose; insulin doses, and constant monitoring of his health and food intake.

So we walk.

This fall, like you and so many other people, we are raising money to help the people displaced by Hurricanes Rita and Katrina
- many of whom are right here in Houston (in fact two of them have been living in our house for the past 9 days).

Like you, we are happy to help in any way we can.

But we continue to raise money to fund research so that one day a cure for diabetes may be developed.

Miles doesn’t get a day off. So neither do we.

Why JDRF? Because JDRF is committed to one thing: raising money to find a cure for people like Miles.

Insulin keeps Miles alive, but it is not a cure.

And because JDRF has one of the lowest overheads of any organization, spending nearly 90 cents of every dollar raised directly for research.

So we’ll keep walking and raising money and praying for the day that we can say “Our Son used to have diabetes”.

Then, our walks can be walks of gratitude.

Then, as Miles said last year, “We’ll start walking to find a cure for another disease so we can help those people too”.

Miles' Day (2005)

2006-02-17T15:13:00.000-08:00

This was written by Miles on 11/11/2005 for his friend, U.S. Senator John Cornyn. The Senator wanted to meet with a group of people to learn more about the challenges of living with Diabetes. (Notice Miles' cool shirt! Order one for yourself!)

Usually I wake up in the morning and my parents come in and they usually check my blood sugar with a glucometer and a lancet. If I am low I feel kind of like a wavy noodle or I feel floppy. If I am high my stomach hurts and I really feel bad. One day last week I really didn’t feel good. I was so low I didn’t even remember eating or drinking a juice box. Then I measure my cereal and have some chocolate milk (that is measured, too). Usually I pack my backpack and I dose myself with insulin.

At school I usually have one or two checks during the day unless I am low a part of the day. The nurse checks me during the day. Then before lunch I bring my lunch to the nurse and she looks at the paper my parents put in with the carbohydrate count on it and she doses me with insulin for my lunch. Miss Mary, the cafeteria lady, brings it back to the nurse and she looks inside to see if I ate everything. If I don’t she calls me to her office and I eat something to fill in for the grams I did not eat.

At 2:00 I go to the nurse’s office for another check. If I am low she gives me a little snack. If I am very low she gives me a whole juice box and if I am high she gives me insulin.
After school …I usually have a check and a snack. I watch my favorite tv shows. I have another check right before dinner. We measure everything I eat for dinner by carbohydrates. After dinner I dose myself and then I do my homework.

Before bed I check my blood sugar AGAIN! Then I put my pajamas on and have a bedtime snack and I brush my teeth and my Papa reads to me and I go to bed.

And this is my day!

Please help to find a cure. Please vote for me and all the other people with diabetes.

Please Promise to remember me.

JDRF-Stemnion partnership announced

2006-02-17T14:38:00.000-08:00

Juvenile Diabetes Research Foundation Partners with Stemnion Research
Looks to Create Insulin-Producing Cells from Amnion-Derived Cells

New York, NY, February 14, 2006 — The Juvenile Diabetes Research Foundation announced today that it is partnering with Stemnion LLC, the Pittsburgh-based biomedical research firm, in an innovative adult stem cell project. Through the Foundation’s expanding Industry Discovery and Development Partnership Program, JDRF is awarding a two-year grant to Stemnion to investigate the ability of stem cells found on the inner membrane of the amnion to differentiate into insulin-secreting cells that might be transplanted into patients with type 1, or juvenile, diabetes.

Stemnion has developed a protocol to cultivate these amnion-derived cells to express a protein essential to the development of pancreatic cells. JDRF will fund Stemnion to explore the ability of these cells to further differentiate into insulin-producing cells. JDRF, the world’s leading charitable funder of research into a cure for type 1 diabetes and its complications, funds some $100 million of science annually. The IDDP Program aims to promote for-profit interest in JDRF’s mission by fostering long-term collaborations with industry in order to drive type 1 diabetes research through discovery and development, and toward commercialization.

“JDRF is very excited to be working with Stemnion and is hopeful that this partnership will lead to the development of a novel approach to creating insulin-producing cells that can be used to cure type 1 diabetes,” said Dr. Richard Insel, JDRF Executive Vice President of Research. “This research also has the potential to provide insights into pathways used by beta cells during their regeneration, an important therapeutic focus for JDRF.”

Islet cell transplantation and beta cell regeneration are cure therapeutic areas that JDRF funds, with an objective of accelerating the development of drugs, treatments, and therapies leading to a cure. During the past several years, the use of islet cell transplantation has proved successful in addressing the short-term complication of hypoglycemic unawareness in patients with type 1 diabetes. But the application of islet transplantation is severely limited by the availability of donor pancreata: while as many as 3 million Americans have type 1 diabetes, fewer than 2,000 pancreata are available for transplantation annually. Stem cells derived from the inner membrane of the amnion—which is normally discarded after the birth of a baby—could provide an abundant source of much needed islet cells. Endogenous regeneration of insulin-producing beta cells is one of the fastest growing areas of diabetes research.

“JDRF’s Industry Discovery and Development Partnership program is aligned with our scientific priorities and our urgency towards advancements in research," said George Sing, CEO of Stemnion. “We have found this program to be industry friendly, providing assistance for small, maturing companies in a number of ways.”

“The progress Stemnion has made in adult stem cell research and the implications this carries for people with diabetes, make this partnership a logical and exciting next step for our organizations,” he added.

About Stemnion: Stemnion is an early-stage biotechnology company developing proprietary technologies based on a unique amnion-derived cell population, which holds great promise for therapeutic cell transplantation and regenerative medicine. Stemnion is focused on cellular therapies for treatment of degenerative diseases currently lacking effective long-term therapies, including diabetes and cirrhosis.

About JDRF: JDRF annually funds some $100 million of research focused on curing type 1 diabetes and its complications, including work in a wide range of scientific areas including regeneration, transplantation, immunology, stem cells, genetics, retinopathy, neuropathy, and angiogenesis. Since it was founded in 1970 by the parents of children with type 1 diabetes, JDRF has provided more than $900 million to diabetes research worldwide. More than 80 percent of JDRF’s expenditures directly support research and education about research.

My Life as a Sibling (2002)

2006-02-16T13:36:00.000-08:00

Diabetes. It is a disease, and it chose to strike my four year old brother, Miles. Our life is filled with complicated tests, shots, and sometimes ultimate chaos! I remember when it first came. I was ten and my brother was two. We were moving from our Washington state home to here in Texas. Miles seemed irritable, cranky, and always wanted to drink and wet his diaper. Everyone blamed it on the move across country, and all the stress that came with it.

When we got to Houston, and he still seemed sick, my Mom took him to a friend who is a nurse. She almost immediatly diagnosed him. The next thing I knew, my little baby brother was whisked away in an ambulance, and I remained at the house, totally confused as to what was happening. Then, I learned more about the disease and how to keep it under control. Soon, our life was filled with confusing blood checks, shots, and (now) pump dosing. I started helping out. Babysitting, helping distract him with his infusion site changes, and checking his blood glucose.

Our life is somewhat better than what is what like when he first got diagnosed, but diabetes still continues to test our family. I really hope for a cure soon, and every time I walk, I hope that this will be the last walk. Maybe, with help, support, encouragment, this one will be.

One Day with Diabetes (2002)

2006-02-16T13:32:00.000-08:00

a Journal by Alicia (with commentary in italics by Rick)

Our day often begins early…

4:14 A.M. Miles wakes us with a cry that immediately tells us he is low. We find him clammy and moist, shaking and crying. After a check we discover his blood glucose is 35. I give him a juice box while Rick goes downstairs to get a snack. I hand feed him cheerios because his hand is shaking too much to hold them. Rick turns on his favorite lullaby tape and I rock him for a few minutes. Back to bed.

8:00 A.M. Miles wakes up in a good mood. He comes in to cuddle, which tells me his glucose number is good. He would not be so happy if it were not. I check his number - it’s 97 - and have breakfast. I measure his cereal and milk. After he finishes I dose him with insulin for the amount of carbohydrates he ate. Miles wants to watch "Dragon Tales" on PBS.

10:00 A.M. It is time for a glucose check. His breakfast insulin has "peaked" (run its course) and I need to see if the dose for breakfast was accurate. He has been running around a lot this morning so he could be going low. His number is 70. That is not too low, but it needs to be igher. Our target is 150, but between 80 and 180 is good. I measure out a 15-gram snack for him and we get ready to do errands.

Because Type 1 Diabetes is often called "Juvenile" Diabetes, people sometimes assume Miles will grow out of it. He won’t. The truth is "Juvenile" refers to the patient’s typical age at diagnosis. Type 1 Diabetes is a chronic disease. At present there is no cure. The Juvenile Diabetes Research Foundation is working to change that. And we’re working with them - volunteering in a number of ways, and participating in the Walk to Cure Diabetes as a way of raising awareness and funds for research towards a cure.

10:30 A.M. I pack a sandwich for Miles (11 grams of carbohydrate in each slice of bread; two tablespoons of peanut butter and one teaspoon of honey. I pack his "kit" (we never go anywhere without it) with his glucometer and testing strips, the sandwich, a sugarfree drink and another juice box. We are ready to go. We always have other items in his kit: A glucogon shot if he passes out, glucose tablets or a tube of cake icing for lows. A low carb snack if he is high (having a high number makes one very hungry), and a couple booklets that give the carbohydrate count of many different foods in case we eat out. Miles is hungry again, so I measure another 15-gram snack and we leave. The effects of exercise (burning calories and lowering blood sugar) can often last for 1-12 hours. Miles has not exercised strenuously, but he has run around a lot, so I do not give him insulin for this snack. I don’t want him to go low. Low glucose numbers can kill brain cells in young children.

Someone asked me "What good does walking do?", and it’s a fair question. The Walk to Cure Diabetes provides our family (and others) with an "organizing event" to help raise funds toward a worthwhile cause. It provides caring people with a motivation to make a gift, no matter what size. It provides encouragement in unbelievable ways: first, the encouragement of each of those notes we receive with an enclosed check made out to JDRF; second, the sight of tens of thousands of people walking because they want to help find a cure for the illness that has invaded my son’s life. As I see them I am moved to tears. Their presence says to me "You are not alone".

12:00 P.M. We have been running errands and now it is lunchtime. I check Miles and he is 300. That is too high. I must have guessed wrong by not dosing him for that last snack. So much of the day is a guessing game. He is getting cranky (a result of a high blood sugar and the fact that it is time to eat) so I give him the sandwich I made earlier. I give him insulin to bring his blood sugar down and help him feel better, then dose him for the sandwich. I do all this in the cereal aisle of the grocery store.

3:00 P.M. Time for a check and snack. His number is 110, which is great. I don’t give him the full dose of insulin for his snack because he is under his target number. If I gave him his regular dose for a 20-gram snack it might keep him at 110, but would probably make him go lower. Each 15 grams of carbohydrates raises Miles’ blood sugar 75 points, so I start doing the math required to get his as close to 150 as possible.

As we are thankful for all of our wonderful friends, we also thank God for the friends we have made in the Kingwood Juvenile Diabetes Support Group. Think about this: it’s almost impossible to find a babysitter for an afternoon, or so that Alicia and I can get away for an evening. Most teenaged babysitters don’t have the maturity to handle blood checks and insulin dosing, and any thinking adult would rightly be intimidated at the thought of what could happen in the event of a serious blood sugar low caused by an inaccurate insulin dosing. Our Support Group consists of other parents of diabetic kids who understand the task. Many of them (and some of their kids) have cared for Miles and ElenaClaire, and we are glad that we’ve been able to provide the same kind of care for their diabetic kids.

5:00 P.M. Dinner time check. I actually got his snack dose right! Yea! I start getting the final touches on dinner. We try to get Miles’ dinner insulin dose before or by 6:00 P.M. This gives the insulin time to "peak" and start it’s way out of his system before we put him to bed. We don’t want his insulin to peak while he is sleeping. I measure his food (1/3 cup of peas, 17 grapes, ½ cup of pasta, 2 tablespoons of ketchup…. he dips everything in ketchup!). He eats, and then I measure what is left to arrive at his dose. Rick turns on the sprinkler for a fun playtime outside.

7:30 P.M. Hopefully this is the last finger stick of the day. Rick checks Miles and calls out,"135!" This, again, is a great number, but not high enough to keep him stable all night. Because Miles has been running around in the sprinkler we know that he will need a larger than normal snack as the exercise keeps affecting him. We suggest several snack ideas. Miles is not hungry. We know that if we put him to bed with no snack, he will go low. This is not good for him or our night of sleep. Finally, ElenaClaire volunteers to do a puppet show if Miles will eat. He thinks that sounds fun, so he eats his cereal and milk and the puppets occasionally remind him to take a bite. 30 grams later Rick heads upstairs to read stories and tuck Miles in. We pray for a restful night of sleep and for stable numbers.

This is a pretty ordinary day. Sometimes it is harder, sometimes easier. I often feel like my brain is tired. I constantly have to think about what will come next and how Miles’ activities now will affect that next step, and how that will impact his morning, afternoon, evening and overnight. I am glad Miles is my son. I love taking care of him . I do not wish this were anyone else’s responsibility. I am glad that we have fantastic medical partners like Dr. Brosnan to help us navigate through the maze called diabetes. But we pray for that day when we can send you a letter telling you we will not be raising anymore money for JDRF because diabetes has been cured!

There are few sentences I would take greater joy in saying than the sentence "My son used to have diabetes". But I believe I will say it someday. The research currently being done is very exciting and groundbreaking, and many people who know (our pediatric endocrinologist for one) have suggested that by the time he graduates from High School, Type 1 Diabetes will bepart of Miles’ past, not a daily reality of his present.I haven’t written this to gain your sympathy; only to help you understand what it is like to live with diabetes, and to invite you to join with our family and millions of other families as we pray and raise money for that cure.

Meet the Pump (2000)

2006-01-17T16:08:00.000-08:00

"When we get the pump... no more shots!" -Miles, May 2000

Here is Miles on the day he got his insulin pump (May 2000)

In June, 2000, Miles began insulin pump therapy with the Disetronic H-TRON®plus insulin pump. The pump contains a cartridge with insulin which is supplied to the body continuously over a 24-hour period by means of an infusion set that connects the pump to his body. Up to 24 hourly basal rates can be programmed which meet Miles' unique insulin requirements regardless of nutrition, specifically adapted to his individual biorhythm, day and night. All increases in blood sugar levels, such as following meals, can quickly be covered by pressing a button to deliver a "bolus". So there is no need for shots, since the basal rate and the bolus are administered to the body from the same cartridge and through the same infusion set. Each function entry can be read on the display, and is accompanied by an acoustic beep. There are various additional functions which make the pump easier to operate and which increase flexibility in everyday life.

When we first brought home a dummy pump to help Miles begin the adjustment, Alicia and I both installed an infusion site in ourselves, just to see what Miles would be feeling. (Eventually, even his sister volunteered to have one, just the one time.) Needless to say, he's not crazy about getting poked in his little bottom (the only place on his body where there's enough fat to have the site) every 2-3 days, though it's considerably better than 3 shots a day. But we found that there is very little pain involved with the installation or removal of the site, and there is almost no sensation of its presence when installed - unless he takes a good fall right on the infusion site.

The pump is, so far, Miles-proof. When he was little, Alicia sewed pockets on the inside of Miles' shirts, between his shoulder blades, where the pump could be carried out of his reach and relatively unnoticed, so that curious little fingers could not overdose him while listening to the beeps. Now, though, Miles wears it on the waistline of his jeans, like a pager - and the infusion site switched to his waistline in 2005. The insulin pump is a pretty amazing little piece of technology, and since June of 2000, we have seen considerable improvements in his daily blood glucose numbers. His general health, attitude, and behavior are all improved, and the stress level in the household has improved considerably. The pump is about the size of a deck of cards. We are so thankful for the improvements technology can make in Miles' life.

This is a drawing of the pump by Miles, age 6. He often drew pictures of his pump to share his story with friends like Congressman Kevin Brady, Congressman Ted Poe and Senator Kay Bailey-Hutchison.

The Original Miles for Miles Shirt

2006-01-05T06:12:00.000-08:00

Back in 2000, the day after Alicia gave a picture of Miles to a woman who works at JDRF, the Houston offices of Paine-Webber called JDRF Houston, asking for a child who could provide a personal "face" to Diabetes. So Miles became the boy for whom the Paine-Webber employees walked for. His face was featured on the front of their shirts, and his name on both front and back.

Here's Miles with Mom at the 2003 Walk:

Followup to the shirt: In 2003, Alicia and I took Miles to a birthday party at one of those indoor activity centers. Before Miles became too active, I needed to check his starting glucose level, so I called him by name and he came over. As I poked his finger with the lancet to draw a little blood, I became aware of a woman watching the procedure - not-uncommon since people are often curious about it and impressed with how willingly Miles offers up his blood. When I was done and sent him off to play, the woman said "I don't mean to be rude, but what is your son's last name?" "Lindholtz", I replied. She responded "I have a shirt with his picture on it. I didn't know the boy on the shirt was a local boy." "Ah", I replied, "You or someone you know must work for Paine-Webber". Sure enough, she and her husband had walked miles...for Miles.

The Day Miles was diagnosed

2006-01-04T05:46:00.000-08:00

On November 24, 1998 I said goodbye to Rick and ElenaClaire and went out the door with our 24 month old son. I was going to take Miles to a walk-in clinic. We did not have a pediatrician because we had moved from Seattle to Houston only one week earlier.

I thought Miles was cranky from the move and all the changes it brought. It never occurred to me that he was seriously ill.

As I held a crying boy in my arms I looked down the hall and saw all the clinic employees huddled together. The Physician's Assistant walked toward me and said "I don't know any other way to say this: your baby has Diabetes."

The rest of the day was a blur. Rick came to the clinic and drove us to the local hospital. Miles was stabilized and then went by ambulance to the pediatric intensive care unit in a larger hospital downtown.

When we left the hospital four days later we could not believe that our new Doctor was going to trust us to give Miles the life-dependent care he needed. We felt so inadequate.

Our entire family had to learn to live with the newest family member: Diabetes. Rick and I had to grieve for the life we had imagined for our son, the life that was changed forever.

Miles' days are filled with constant monitoring. His fingers have been poked 8-10 times a day since he was two years old, to draw blood and check his glucose. We have to measure every bit of food or drink that goes into his mouth and dose him with insulin to cover it. Stress, exercise, illness and many other daily experiences can complicate his disease and cause a roller coaster of physical sensations that make him feel sick.

One of the hardest aspects of having a very young chronically ill child is the lack of two way communication. We spend every day wondering if his behavior is due to high blood sugar or if he is merely acting his age.

Our family has had to accept this newest family member, Diabetes. through the grace and strength of God we have. But we do not have to sit back and accept that there is no cure.
Miles receives insulin every day. His life is dependent on it. But insulin is not a cure.

We believe a cure is possible. That's why we join with others in the JDRF Walk to Cure Diabetes. We invite you to consider being part of our walk. Will you make a donation, or raise funds and walk with us?

Diabetic Complications

2006-01-03T08:06:00.000-08:00

Heart disease is the leading cause of diabetes-related deaths. Adults with diabetes have heart disease death rates about 2 to 4 times as high as those of adults without diabetes.

Stroke: The risk of stroke is 2 to 4 times higher in people with diabetes.High blood pressure: An estimated 60 to 65 percent of people with diabetes have high blood pressure.

Blindness: Diabetes is the leading cause of new cases of blindness in adults 20 to 74 years old. Diabetic retinopathy causes from 12,000 to 24,000 new cases of blindness each year.

Kidney disease: Diabetes is the leading cause of end-stage renal disease, accounting for about 40 percent of new cases. 27,851 people with diabetes developed end-stage renal disease in 1995. In 1995, a total of 98,872 people with diabetes underwent dialysis or kidney transplantation.

Nervous system disease: About 60 to 70 percent of people with diabetes have mild to severe forms of nervous system damage (which often includes impaired sensation or pain in the feet or hands, slowed digestion of food in the stomach, carpal tunnel syndrome, and other nerve problems). Severe forms of diabetic nerve disease are a major contributing cause of lower extremity amputations.

Amputations: More than half of lower limb amputations in the United States occur among people with diabetes. From 1993 to 1995, about 67,000 amputations were performed each year among people with diabetes.

Dental disease: Periodontal disease (a type of gum disease that can lead to tooth loss) occurs with greater frequency and severity among people with diabetes. Periodontal disease has been reported to occur among 30 percent of people age 19 years or older with type 1 diabetes.

Complications of pregnancy: The rate of major congenital malformations in babies born to women with preexisting diabetes varies from 0 to 5 percent among women who receive preconception care to 10 percent among women who do not receive preconception care. Between 3 and 5 percent of pregnancies among women with diabetes result in death of the newborn; the rate for women who do not have diabetes is 1.5 percent.

Other complications: Diabetes can directly cause acute life-threatening events, such as diabetic ketoacidosis and hyperosmolar nonketotic coma*. People with diabetes are more susceptible to many other illnesses. For example, they are more likely to die of pneumonia or influenza than people who do not have diabetes.

On average, the life expectancy of a child with type 1 diabetes is shortened by 15 years.

*Diabetic ketoacidosis and hyperosmolar nonketotic coma are medical conditions that can result from biochemical imbalance in uncontrolled diabetes.