Wednesday, August 18, 2004
Iacocca's challenge
The JDRF is a conduit we support because it helps regular people join the fight. Former Chrystler chief and philanthropist Lee Iacocca announced his own separate initiative this week. It's a case study in what the determination of one well-known man can do. Here's the press release:
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.
Friday, August 13, 2004
Treatment blocks Type I diabetes in mice
Here's a quick take (click the link above for a fuller release and a link to the actual research report)
From the JDRF:
JDRF-funded researchers have identified a protein on immune T cells that triggers type 1 diabetes in mice when it interacts with another protein found in cells of the pancreas. The scientists report that blocking the interaction prevents the disease without compromising normal immune defenses or causing measurable side effects.
The finding points to a possible strategy for preventing type 1 diabetes in humans, since the mouse T cell protein has a counterpart in the human immune system.
When the scientists used antibodies to prevent the protein of interest from binding its receptor, the mice were completely protected from the disease. (The effect is like plugging a keyhole so that even the correct key won’t turn the ignition). “You don’t need a calculator to tell the treatment group from the placebo group. It’s 100 percent effective,” said Lewis Lanier, Ph.D., of the University of California, San Francisco (UCSF), in a press statement.
The researchers expect that a “humanized” antibody, working in a similar manner, could provide an effective type 1 diabetes treatment in people. The finding is important, because unlike other treatments reported in mice, this therapy was effective even when given relatively late in disease progression.
Amazing response!
We here at the Team Shelby HQ are counting that as a HUGE success!
We put this up and weren't sure what any of you would think, or if anyone would actually come to the site more than once or get anything out of it. We're so glad it has hit a chord with so many of you.
That is sure to only spread in the coming weeks and months. Please bookmark us, if you haven't already, and come back often. If you run a site of your own, link to us. Let us know so we can check out your site and add a link ourselves.
We're not a big, fancy Web presence, nor are we a big, fancy organization. We're just doing what we believe is right to be the best parents we can be.
Anyone who wants to be included on the Team Shelby e-mail list, write us at teamshelby@yahoo.com
Wednesday, August 11, 2004
Shelby & Bill Robinson
The kick-off luncheon was inspirational, to say the least. With this year's theme being "Go for the cure!", it was easy to get into the spirit of the Olympics and "join the JDRF challenge and discover the power of VICTORY!"
Bill Robinson, Sr Vice President and General Manager of Pepsi Bottling Co gave an fantastic speech about how he and Pepsi are inspired by what the JDRF is doing with research and will continue to be our corporate sponsor. The employees of Pepsi have formed smaller teams within the company and are all competing to see who can raise the most money!
We also heard from an amazing woman who told the story of how she lost her father when she was only 14 to Type I diabetes. Of course, back then there wasn't much in the way of treatment and I'm sure many people found out much later in life that they had the disease allowing for advanced complications. Then, she talked about her stepson who is married to an amazing woman who is also afflicted with Type I and the two of them have an adorable baby boy who was diagnosed at 9 months.
Even with research coming as far as it has, it's difficult to monitor BG (blood glucose) in such a small baby. Ugh!
As Shelby, Alex and I were picking up all of our fund-raising supplies, Bill Robinson stopped Shelby to admire her "Team Shelby" shirt. They chatted for a long while when I finally said, "Shelby, do you know who this is? He's the President of Pepsi! His company makes Diet Pepsi." She thought that was very cool. He indulged us with a picture and afterward Shelby said, "Wow mommy, I can't believe that I had my picture taken with THE PRESIDENT!" Gulp. Too cute!
He's a fabulous speaker and a charming man.
Needless to say, we were all determined by the end of the luncheon to GO FOR THE GOLD!
Donate online
Here's our 'how to":
Go to JDRF.org walk page. You can also get there through the main page and click on the walking shoe link at the right labeled "Walk to Cure Diabetes"
Under the "support a walker" feature you can type in the name and find that person.
When the name comes up, click on it and a page will come up that says "Alex Corey is walking with Team Shelby (Corey) on October 22, 2005 in Napa Valley, CA."
Liz, Scott, Alex and Shelby are all registered.
There are buttons to "Support this walker" to donate online or "join the team" to register for the walk yourself.
It's VERY easy.
If something goes wrong, write Team Shelby Fundraising guru Liz.
Friday, August 06, 2004
Welcome!
This is the first of what we hope is a series of exciting additions to the Team Shelby experience for 2004.
This is truly a labor of love intended to make it easier for you -- the members of Team Shelby -- to get information about diabetes, the Juvenile Diabetes Research Foundation and what we're up to here at Team Shelby.
Today is the kickoff of 2004 fund-raising for Team Shelby and the JDRF Walk to Cure Diabetes being held in Walnut Creek, Calif., on Oct. 3. Team representatives gathered today at the Marriott hotel in San Ramon, Calif., along with hundreds of people from the walk's corporate sponsors to launch the 2004 campaign. We'll post more information about the kickoff after Liz returns.
The Team Shelby webmaster (Scott) will update this site regularly from Team Shelby HQ (our laundry room/office) with fund-raising tips, news about the latest in diabetes research, and other information to keep everyone plugged in. We hope this site will be both fun and informative. It may even give you cause to pause and reflect from time to time on the inherent challenges in fighting diabetes.
We've created this as a 'blog' so anyone can comment on any of the 'posts' listed here. We hope you all will feel free to participate in this site and send us your thoughts and questions. From time to time, we'll post answers to common questions and links to resources to help you both feel comfortable as a team member and arm you with the accurate information you need to share with your family, friends and co-workers.
This is going to be an amazing year for Team Shelby. We're all very excited about the Olympic theme of this year's campaign.
Thanks again for visiting our site. Come back often and refer the URL to anyone you feel may be interested in Team Shelby.
Thursday, August 05, 2004
We're pumping!
Since she was diagnosed almost three years ago, we've been giving Shelby insulin through shots. A while back we went from the trusty old syringe to an insulin pen, which doesn't require that we draw insulin from a vial. But Shelby still was getting up to 10 injections a day in the top of her hip, the back of her arms or the fronts of her legs. You also can give injections in the fat layer in the abdomen, but a 45-pound 5 year old doesn't have much of a fat layer there.
Though she is a trooper, getting 10 shots a day is a major pain and a major inconvenience. Imagine having to remember to carry all the stuff with you then find inconspicuous ways to give your child an injection at the mall. It also produced problems at school where not only are we dealing with staff that isn't trained on giving shots but other kids for whom syringes and needles pose a safety issue.
The state-of-the-art solution to the problem is an insulin pump. (We have some details about it in the Diabetes FAQs.) The idea of the pump is to eliminate the injections by placing a catheter under the skin and constantly deliver required insulin through a small, pager-sized computer and insulin reservoir she wears all the time.
Not only is the pump more precise, it also remembers when to give her insulin, so her baseline blood glucose levels are more even. It also has a really cool feature that helps us calculate how much to give her. All we have to put in is how many carbohyrdates she eats and her blood glucose level. The pump calculates how much she needs, even taking into account how much insulin is still active in her body. It is totally cool!
The pump also will be much easier to manage when she starts kindergarten later this month. There won't be any of those pesky needles schools don't allow on campus or the risk that some kid will decide he or she wants to shoot up WAY too much insulin to see what it feels like. The pump also has safety features to protect Shelby from mischievous fingers or accidentally giving herself too much medicine.
We've been at this now for almost a month. We are all getting very comfortable with it and her blood glucose readings are beginning to show the signs of a successful transition.
Sunday, August 01, 2004
Diabetes FAQs
Our goal here is to answer some of the initial questions many people ask. For those on Team Shelby who are soliciting new supporters, this can offer some good information to share with people who have wildly wrong or outdated conceptions of diabetes. For others, it's a good place to check back on every so often to be reminded of those things you already know but might have just forgotten.
Most of all, this is not meant to be medical advice. This is just what we've learned and how we understand this disease that our daughter lives with every day. If you or someone you know has diabetes or is showing any symptoms, seek medical advice immediately about your specific condition.
1. What is diabetes
2. Why the two types of diabetes?
3. Can you outgrow juvenile diabetes?
4. Can Shelby eat sweets?
5. Insulin is cure for Type I diabetes, right?
6. Why does Shelby prick her finger?
7. What are hypo- and hyperglycemia?
8. What does an insulin pump do?
9. An insulin pump is basically an artificial
pancreas, then?
10. What's the cure?
What is diabetes?
Diabetes is a malfunction of the body's insulin response system. The pancreas creates a hormone called insulin to assist the cells of the body to take in glucose, or simple sugar contained in everything we eat. Glucose is used to fuel the cells and allow them to carry out their work, from fighting disease to regular growth and development to supporting normal brain function. But cells can't take up the glucose they need without insulin, which acts as a gatekeeper allowing the glucose to enter the cells. For a variety of reasons, some people don't produce enough insulin or require more than their pancreas can produce. When there is a shortage of insulin, the glucose builds up in the bloodstream, creating a condition we often call high blood sugar. The short-circuiting of the insulin response is called diabetes.
Back to questions
Why the two types of diabetes?
We hear a lot today about the exponential growth of diabetes cases in America. It's linked to soft drinks at school, people whom never exercise and those who just plain eat too much. Experts are regularly on the news talking about how America's obesity epidemic is causing the rising in diabetes cases. What they are talking about is known as Type II diabetes. It is the form of diabetes that the American Diabetes Association focuses on. It is usually found in older people, those who have unhealthy lifestyles or those whose pancreas is still making insulin but it's just not enough.
Type I diabetes, also called juvenile diabetes, is much different. While the symptoms and many of the treatments are similar to those for Type II, someone with Type I diabetes has a pancreas that produces no insulin. For reasons that are still the subject of robust research, the white blood cells attack and kill the islets in the pancreas that make insulin. We posted a research development on that in July.
The differentiation is necessary because the treatments used for each kind is much different. In those with Type II diabetes, lifestyle changes are often the first line of treatment. If doctors can get that person's lifestyle to match his or her body, with some minor medical interventions, the symptoms often subside or disappear. However, those with Type I diabetes need an exterior source of insulin to maintain proper bodily functions. That difference provides a host of lifelong challenges for the person with Type I.
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Can you outgrow juvenile diabetes?
The name seems to suggest that this is a temporary or childhood condition that will go away as the body matures. But that is not the case. The term "juvenile" in this case refers to when the disease is most often first discovered. The vast majority of those with Type I develop it before they are teens. Shelby was diagnosed just before her third birthday. We've heard of some case where infants as young as 6 months have been diagnosed.
Type I diabetes is a lifelong condition.
Back to questions
Can Shelby eat sweets?
Absolutely! In fact, she loves ice cream, cake and just about every type of chocolate.
The key is keeping track of how much she eats and giving enough insulin to allow her body to absorb it without triggering high blood sugar. We do some things that are easy and just make sense to us. For example, she drinks diet soda instead of the sugary kind to save having to deal with the 41 grams of carbohydrate in one can of regular soda. Heck, that's equal to almost 3 cups of fresh watermelon, which is a whole lot of watermelon.
Before there were advanced types of injectable insulin that reacted quickly and blood glucose monitoring was streamlined, adjusting insulin levels to match the high carbohydrate content of most sweets was very hard. Sugar-free everything was the order of the day. For some with Type II diabetes that's still the case, mostly because they are trying to control their disease with diet. For a child with Type I diabetes, our treatment team advocates counting the carbohydrates in what Shelby eats, then compensating with the appropriate amount of insulin.
Shelby absolutely eats everything any other child does.
Back to questions
Insulin is cure for Type I diabetes, right?
In a word, no. Insulin is a natural hormone everyone needs to metabolize nutrients properly. Insulin shots are a crude substitute for what the body usually does on an on-going basis.
Why does Shelby prick her finger?
At least 8 times a day, Shelby pricks her finger to get a small amount of blood that is used in her glucose monitor to measure her blood sugar, or blood glucose, levels. The monitor we use requires only a small drop of blood and takes 5 seconds to give a reading.
We use that reading to calculate how much she may need to eat or drink and how much insulin to give her to keep her readings in the normal range, between 70 and 120.
While the prick is not a walk in the park, it isn't incredibly painful. Shelby usually sleeps through the tests we have to do at 11 p.m. and 3 a.m.
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What are hypo- and hyperglycemia?
Those are the fancy medical terms for what we call "low" and "high" blood sugar.
The normal blood glucose reading is between 70 and 120. Any number below 70 is called hypoglycemia or low blood sugar. When this happens, Shelby's skin tends to get clammy and pale, her speech becomes slurred and unfocused, her hands might start shaking, or she may become irrationally emotional. Have you ever been in the middle of a major project and worked through lunch? Pretty soon you feel kind of rundown, confused and perhaps nauseous? That's hypoglycemia. If left untreated, someone with diabetes can go unconscious.
On the other end of the range is hyperglycemia or high blood sugar. Readings over 120 indicate that the body isn't absorbing nutrients properly. The immediate indicators of this condition are sometimes hyperactivity, uncontrollable thirst and urination, and nausea. While someone with diabetes rarely blacks out from hyperglycemia, if this condition is not controlled it can produce irreversible, long-term complications, such as kidney failure, blindness and circulatory problems.
Back to questions
What does an insulin pump do?
An insulin pump in a device about the size of a pager that is worn under clothes that houses a supply of fast-acting insulin. A small catheter connects the computerized device to the patient. The pump can be programmed to deliver a steady flow of insulin constantly and enables a quick and painless way to deliver an additional dose, called a bolus, after meals or when the blood sugar is running high.
Using a pump eliminates the need to give numerous shots to deliver required insulin. The location where the catheter is inserted is changed once every three days, far better than having to take up to 10 shots a day. The pump also reduces the amount of gear someone with Type I diabetes has to carry around and eliminates the safety problems loose syringes can cause on school campuses.
Back to questions
An insulin pump is basically an artificial pancreas, then?
The pump we recently got for Shelby is state of the art. It can be programmed in dozens of ways. But we still have to tell it what her blood sugar readings are and we still have to input how many carbohydrates she has eaten. While it's an major advance, it is not an independent artificial pancreas.
We've definitely come to respect the work the pancreas does. This one little organ, in conjunction with others inside all of us, measures how much carbohydrate we've eaten, how much activity we're engaged in and sends out the right amount of insulin to keep everything running smoothly. It is so efficient the most of us play sports, work in the yard, stroll to the store, gobble up pizza, slurp Starbuck's drinks and grab a quick bowl of ice cream as a treat without giving it a second thought. While someone with diabetes can do all those things, he or she has to think about each and every step of it and prepare accordingly.
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What's the cure?
There isn't one, yet.
Isn't that frustrating? You are faced with watching your 3-year-old having to deal with this disease, which could end her life prematurely or change her lifestyle in a million unimaginable ways, and there is no way to fix it.
That's what we wanted to do – just fix it. Give the magic pill. Make it go away. But we couldn't. The awful truth is there is no cure for Type I diabetes. In 1970, parents of children with juvenile diabetes felt just as frustrated and couldn't sit still and do nothing. So they formed the Juvenile Diabetes Research Foundation on the basic idea that Type I diabetes was a solvable puzzle if modern medical researchers had the tools and time to find that solution.
Since its inception, the JDRF has become the largest non-governmental funder of research into the causes and cures of Type I diabetes. The foundation has awarded more than $800 million to diabetes research, including more than $80 million in fiscal year 2003. That year alone, the foundation funded 500 research centers, grants and fellowships in 19 countries, according to its Web site. Results are coming in everyday from faster acting types of insulin to advanced insulin pumps to research into insulin islet transplants to isolating the genes that cause all of this in the first place.
We believe there will be a cure in Shelby's lifetime. We are determined to do everything we can to help. That's why we support the JDRF and ask our friends and family members to do the same. Finding a cure is the sole reason there is a Team Shelby.
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