Tuesday, October 27, 2009

Big Blue Test

You're invited to a diabetes "test-in!" All you have to remember is the number 14.

Why 14? November 14th is World Diabetes Day. On that day, at 14:00 hours (2 pm, local time), thousands of people with diabetes will test their blood sugar, do 14 minutes of exercise, test again and share their results online. This is going to be called The Big Blue Test.

What the Big Blue Test is all about: The event was created to help raise diabetes, awareness, the importance of exercise in diabetes management, and to help connect people with each other in an exciting, virtual way. It's organized by Manny Hernandez and the folks at TuDiabetes.

“People with diabetes have to test their blood sugar routinely. It can be a very lonely activity.” said Manny, co-founder of TuDiabetes and a person with diabetes himself. “We want people to take The Big Blue Test, to shed light on this chronic condition and the importance of exercise on World Diabetes Day.”

Here's how you can take part on November 14th:

1. Test your blood sugar.
2. Run, jog, walk the dog or do anything you’d normally do as part of your exercise routine for 14 minutes.
3. Test your blood sugar again.
4. Go to http://bigbluetest.org (or your preferred diabetes social network*) and post your readings and what physical activity you did. If you have a camera, you can also add a photo of your reading(s) or you exercising.
5. If you have a Twitter account, you can also post your readings on Twitter (use the #bigbluetest hashtag) and link back to http://bigbluetest.org.

Monday, October 26, 2009

2009 Walk to Cure Diabetes

This past Saturday our family and our close friends formed a walk team to raise money for diabetes research. The turn-out of walkers surprised us since the forecast had called for a cold, rainy morning. Walking through mud and puddles does not sound like a very inviting prospect. Yet the crowd that showed up was impressive.

Among the gathering was a sea of people wearing red t-shirts. There were over 120 of them, and all were part of Cassie's team. Miller's classmates from high school were there. Cassie's field hockey teammates were there. Our neighbors and co-workers came too. Even Kelly's mom, traveled all the way up from Florida to take part.

The weather was soggy and cold indeed. But the spirit of support was enough to warm everyone's hearts.

Thanks for helping us raise over $50,000 for research this year. That should be enough to buy at least one high speed centrifuge for the dedicated scientists who are working hard to help find a cure for this disease.

Monday, October 12, 2009

Not so Smart Strips

The FDA issued a warning that certain glucose monitoring strips can get confused by non-glucose sugars. If a patient is undergoing peritoneal dialysis or has undergone surgery, certain therapies may call for products that contain non-glucose sugars like maltose, galactose and xylose. These sugars can give a falsely high blood sugar reading when GDH-PQQ test strips are used and cause patients and caretakers to over treat with too much insulin.

GDH-PQQ stands for glucose dehydrogenase pyrroloquinoline quinone, and the FDA has published a list of strips that may cause a false high reading. Widely used GDH-PQQ test strips such as the Accucheck, TRUEtest and Freestyle brands fall into this listing.

This alert shouldn't affect your day to day use of these strips and monitor systems, but please be sure to look into this if your child has recently undergone surgery.

Walking for another Cure

This Sunday my family drove 2 hours to walk 1.3 miles for a cure. But it wasn't to a JDRF walk to cure diabetes. In fact, this walk wasn't for diabetes at all . It was to support our friend Dean's valiant fight with ALS (Lou Gehrig's disease).

Having type-1 diabetes in our lives has changed so many things. One positive change that we've seen is that it's made our little Cassie much more compassionate for others who have similar challenges. With such a dark cloud like diabetes looming over our every day lives, it's important to notice the silver linings too.

Friday, October 09, 2009

Diabetes Videos

There are some kids who hide their diabetes from the world. Here's what's on the other end of the spectrum.

The teen producer/rapper, LW, was the WINNER of the 2008 World Diabetes Day Young Voices video contest with this submission.

Are you feeling equally creative or expressive about diabetes? Over at TuDIABETES.com, Manny Hernandez is now holding a video contest to raise diabetes awareness. Check out the entry details for the Making Sense of Diabetes contest here.

Thursday, October 08, 2009

Xenotransplantation Down Under

Yesterday (Oct. 7, 2009) in New Zealand, Living Cell Technologies announced a successful first transplant of DIABECELL, an implant made of encapsulated pig islet cells that produces insulin. It was implanted through a laparoscopic procedure into the abdomen of a 47 year old man who has had type 1 diabetes for 20 years. The Aukland trial is being conducted by Dr John Baker, principal investigator and diabetes specialist based at Middlemore Hospital.

A couple definitions that may be helpful: The process of encapsulation protects the insulin producing cells of the implant from attack by the body's immune defense system and prevents rejection. The DIABECELL procedure is called "xenotransplantation" because the insulin producing cells come from pigs (porcine) not humans.

Stay tuned- in six months, the results of the procedure will be published. Hopefully, the patient will be diabetes free and not have the rejection complications associated with transplantation.

Details of the trial are available at www.ClinicalTrials.gov. You can download the PR release from the Living Cell Technologies website.

Up the Rollercoaster

Lucas' mom described diabetes as an emotional rollercoaster. Often times, parents of diabetic children place the majority of their attention on the depressing nature of the daily struggles with a chronic disease. Yet, it's unfair to call diabetes an emotional rollercoaster without mentioning the emotional highs that go with it.

It has been so uplifting to encounter so many caring individuals - strangers and friends- who have reached out to our family over the years to lend their support. One of the most moving moments of our diabetes life was at our first JDRF Walk to Cure Diabetes event. There were thousands there to raise money for a cure and to show that they care. Cassie looked up at me when she saw the crowd and asked, "Daddy, are they all here for me?"

Needless to say, we haven't missed a walk since.

This year we're walking again- join us or sponsor our team for a cure

Tuesday, October 06, 2009

The Angry Low

On the juvenation forums, a parent whose son was newly diagnosed with type-1 diabetes noticed that he would sometimes go into angry fits when experiencing rapid swings in blood sugar. Since it had never happened until a few weeks ago, she worried alot about this new Jeckyll and Hyde behavior.

It may be comforting for her to know that this isn't so uncommon. Nearly twenty years ago, researchers at the University of Virginia published a study entitled, Mood changes associated with blood glucose fluctuations in insulin-dependent diabetes mellitus.

We've witnessed first hand that mood shifts often happen with dramatic fluctuations in blood sugar. We've found it very challenging at times to "reason" with our daughter during these episodes and it makes it hard to treat a really bad high or low. The net takeaway- they're not themselves. They don't mean to be hateful. They feel guilty afterward.

But most importantly, they still need your help even if they're fighting you in this delusional state.

So DON'T take any attacks on you personally. DO try to stay calm throughout the fit. It's hard and can be mentally exhausting, but you can all get through it together.

Monday, October 05, 2009

The Amazing Moira

Type-1 diabetes can be overwhelming. The day to day burden and worries can leave a parent and diabetic child absolutely exhausted, demoralized and dejected. Yet we urge our kids to not let the disease be an obstacle to their dreams. Do you follow your own words of wisdom? It's hard to give this advice if you don't take it yourself.

Last week I attended JDRF committee meetings in NYC. One of my fellow volunteers is the extraordinary Moira McCarthy Stanford - one of the organization's most prized assets and advocates. She is one person who doesn't let diabetes stand in her way. In fact, she uses it to fuel her life and give it purpose.

Before the meeting I got her official bio and was amazed by everything she's done, and continues to do, to help find a cure for diabetes. Here's a snippet from that bio, which should inspire us to do more and shows us what's possible:

Moira is the mother of Lauren, 18 diagnosed 12 years ago this month. She has served as New England Chapter President, as Chairmom of Children's Congress 2005, National Chair of Grass Roots Advocacy, Volunteer of the Year in 2007 and currently as national Outreach Chair. She works as a contributing editor for SKI Magazine and as winter sports editor of the Boston Herald. She formerly worked for the New York Times. She is the author of five books. She lives in Plymouth, MA with her husband Sean Stanford and Lauren. Her older daughter Leigh is a recent Graduate of Fordham and works in NYC at Bloomberg. Lauren was a speaker at the 2008 Democratic National Convention and at the private memorial service for Senator Ted Kennedy. Her friendship with him began as a result of her advocacy for JDRF.

Moira's an example for us all. What will go on your bio?

Saturday, October 03, 2009

Resource & Reminder

Here's a new resource: My friend Gina Capone launched a new website, The Diabetes Resource on October 1st. She's hoping to build a one-stop, convenient and easy to navigate web site that covers anything and everything related to diabetes:camps, monitors, professionals, articles and chats. The site will be updated daily and may be a good place for you to check out.

And here's the reminder: Another great resource for type-1 diabetes (and one that I've mentioned in previous posts) is the Children With Diabetes website. The News section is a great place to review from time to see what's in development.

Friday, October 02, 2009

Carioline's Diabetes Video

Tim Chizak created this inspiring video about his daughter Caroline when he rode his bike for over 100(!) miles in Killington, Vermont this summer. Although I sometimes gasp just typing, Tom didn't seem to break a sweat by raising over $14,000 for diabetes research. I think one of the secrets to his recipe for success was the video below.

Although he may have not set out to create an educational video, I feel that his narrative does a fantastic job of explaining to people who are not touched by type-1 diabetes what it's like to live with this disease. Next time someone asks you what it's like, I suggest you just point them to this lovely film of Caroline.