My daughter, Sarah, was diagnosed with Type 1 diabetes in January 2003. Once the initial shock wore off, my maternal instincts took over. I wanted to protect my child from the long-term effects of this disease. At the same time, as a working mother, I experienced the stress of handing over the care of my child to others and not knowing how her diabetes was being managed.

So, I created MyCareConnect, an online and mobile based care management and communication tool that gives me, and all Sarah’s caregivers, more control over her daily care. It tells me, real-time, exactly how she’s doing at school with no more phone tag, no more texting or hand-written notes.  Here is how we all benefit:

• As data is entered, we immediately receive email and text messages.
• Logs are automatically created and we can share them with our Endo and CDE’s.
• Sarah experiences more class time and enjoys greater independence.
• Our school nurse loves it as it gives her a better tool to log and communicate with us.
• Our family conversations are no longer dominated by diabetes since we receive notifications throughout the day. When Sarah gets home, she is not greeted with “How were your numbers today?”
• It’s Free

MyCareConnect is what it is today because through the years, parents and PWD’s have been generous in providing ideas about how to make us better. School nurses have spent countless hours with me, describing the challenges they face as diabetes, asthma and allergies are on the rise, and funding for resources is on the decline. I depend on the input of experts:  those who live with diabetes daily as well as those that provide support and care.

From the very beginning, we have relied on the JDRF for their support and the valuable resources they have provided our family.  We are excited to partner with the JDRF in North Eastern Ohio in order to make our resource available to its families.

-Pam Henry
MyCareConnect Founder and Mom of a Child with Diabetes

A Northeast Ohio Families View on My Care Connect

In September of 2011 our family was fortunate to be introduced to My Care Connect, at the JDRF Walk To Cure Diabetes. When we learned of My Care Connect our three-year-old son was three weeks into his first year of pre-school, and we, as a family, were very stressed.  Click here for the full blog.

Resources

Learn more by visiting mycareconnect.com

Investigators at the La Jolla Institute of Allergy and Immunology in San Diego, CA, used actual human pancreatic tissue from donors with T1D provided by the JDRF Network for Pancreatic Organ Donors with Diabetes (nPOD). Their work proved that a specific type of T cell (a critical immune system component involved in the development of T1D) called a “CD8 T cell,” which is responsible for the attack on insulin-producing beta cells, can be found in the pancreas. The study, which appeared in the January 2, 2012 issue of The Journal of Experimental Medicine, examined pancreatic tissue from 45 organ donors who had T1D. The lead investigator, Matthias von Herrath, M.D., and his research team were able to detect evidence of the dangerous actions of the CD8 T cells in the pancreatic islets (which contain beta cells).

“This study demonstrates for the first time the presence of CD8 T cells, specific for beta cells, within human islets. While this has been a well-established fact in animal models of type 1 diabetes, the La Jolla investigators have now demonstrated it in human samples,” says Teodora P. Staeva, Ph.D., director of the immune therapies program at JDRF. “The presence of these CD8 T cells, which are capable of killing the insulin-producing beta cells, was shown in donors with recent-onset as well as long-standing T1D.” Dr. Staeva further explains: “Identifying the CD8 T cells that cause the beta-cell destruction can help to develop therapies that specifically target those cells and may thus offer safer interventions.” The research, which was funded by the National Institutes of Health, relied on nPOD, an innovative, JDRF-funded program based at the University of Florida, Gainesville, that provides donated organ tissue from people with T1D to scientists around the world. The nPOD program gives researchers a unique opportunity to literally see—and better understand—all phases of T1D and its impact on the pancreas and immune system.

“The power of nPOD is its ability to recover high-quality tissues from donors at all stages of T1D and make that available to researchers throughout the world,” says Dr. Staeva. “In addition, nPOD has spearheaded efforts on data sharing and scientific exchange that are setting new standards for the field.”

nPOD is a collaborative T1D research project that supports scientific investigators by providing, without cost, rare and difficult-to-obtain tissues. nPOD currently supports more than 70 T1D-related scientific studies at institutions around the world.

Learn more about nPOD at www.jdrfnPOD.org.

Key Point: Researchers recently dem¬onstrated for the first time a direct association between human beta cell destruction and CD8 T cells, which are cells that play an important role in the body’s immune system. This autoim¬mune “attack” is a hallmark of T1D and it results in the destruction of insulin-producing beta cells in the pancreas. In their investigation, the researchers used human tissue samples from the pan¬creases of T1D organ donors obtained through nPOD, a JDRF collaborative re¬search project. This new study provides evidence that CD8 T cells are present in the islets of the pancreas that contain beta cells. These findings are important for future research on preserving beta-cell function and establishing biomark¬ers for therapies for T1D.

My family and I are fairly new to the JDRF community. We’ve been through a lot on our way here. I decided to share our story of stress, hard work, and bravery on the part of our daughter. Our eight-year-old daughter, Amelie, was diagnosed on September 20th of last year, shortly after her 7th birthday. As is usually the case, the diagnosis was big shocker, but especially for my husband Shawn. Shawn has seen first hand the effects of juvenile diabetes on a child, since his now 43-year-old brother was diagnosed at a very young age himself.

As a family, we were doing alright, however, we had one big unforeseen obstacle. My daughter’s school did not have a nurse on staff, which meant that my husband and I had to go to the school for lunch every day to administer Amelie’s insulin. This is not something we could continue due to our work schedules. When third grade came around we found a new school that had a nurse on staff full-time, which apparently is not the norm these days. We are so grateful that the nurse is there because we can be at work comfortably knowing that she is well taken care of while at school.

Last year, Amelie switched from taking insulin shots to using the insulin pump. The first two months were very difficult but we eventually figured it out. Amelie says that she would never go back to shots because with the pump diabetes management has improved. Of course, it will never be perfect; only a cure can make things perfect again. There are nights when I still check her blood glucose levels several times because she has been unsure of her blood glucose level before bed previously. Any parent with a type 1 child knows that it’s hard to sleep if their child goes to bed struggling to control their blood glucose level. It is a constant struggle that requires complete vigilance from both the child and the parents.

We need Amelie’s cooperation or all our efforts to keep her healthy and strong will be for naught. Even at eight, Amelie understands this responsibility and checks her levels prior to every meal or snack. What a big responsibility for a child! As a mother, I sometimes forget what a burden type 1 diabetes is on a child. They’re forced to grow up very quickly.  In Amelie’s case, she was overwhelmed and some time into the illness she started to develop anxiety over low blood glucose levels. She started testing herself every five minutes, she was both nervous and exhausted. Amelie’s endocrinologist team was able to get her counseling to help her understand her body’s response to type 1 diabetes. Thanks to them, Amelie is much happier as she is able to manage her diabetes correctly and with a healthy attitude.

This last year all of us in the Szakacs family learned a lot about managing type 1 and how different people react in unique ways to the effects of the disease. Amelie’s three-year-old sister, Ales, sometimes says she feels low because she noticed that when Amelie says it, she will get a juice box, glucose tablet or another sugary treat. Ales figured if she says she is low, she might end up with something sweet too, funny, yet quite sad…

I do hope, like all parents of type 1 children, that a cure will be found in Amelie’s lifetime. Or if not a cure maybe an artificial pancreas. Thanks to JDRF, I know as the family of a Type I child, that we are not alone. I understand that my struggle, as a mother, is shared with many other mothers out there. It’s somehow comforting and it makes the burden easier to carry. The weight is being distributed among many shoulders and it really helps! This is not only true for mothers like me, but it is true for children like Amelie. She has learned that there are other children, just like her, who have the same challenges.

For the first time, my family and I will be participating in the JDRF Walk for Cure. Last year, we were in the hospital with Amelie right after her diagnosis. This time, not only will we be able to attend the walk, but we have her one year anniversary coming up. We will use that day to celebrate how far Amelie has come.

Sincerely,
Angelika Szakacs

If this story gets you pumped up to hit the road, check out the 2012 JDRF Ride to Cure Diabetes.

The Ride Day is over - and JDRF’s work to find a cure continues. The ride went great.
9 hours, 104mi, 108degrees (but it was a DRY 108! ), and about 450oz of fluids going in.

300 + riders from age 13 to 83 raised $1,200,000+ for JDRF.
We contributed over $6000 towards that! It was priceless. Many thanks to you all for the support of JDRF.

Priceless! Who’s game for next year?
Paul

My 4 ½ year old son has had diabetes for the past year and a half and just recently got on the pump. I was wondering what would be the best way to protect his expensive new “pancreas”, while providing a comfortable fit for someone so small. While doing some research on the internet I came across a company, in Austin, Texas, by the name of Spybelt. I looked on their website and found a broad range of belts for adults as well as children. They carry single and double pocket belts that you can customize to carry a diabetes pump. I was especially excited to see that they carried double pocket belts because my son also wears a continuous glucose monitor. I contacted the company via phone and was able to talk with both the production manager who customized the belt and the lady from customer service who made sure my order was correct and sent in a timely manner. With so many decisions to make and the variety of options available, I found this company to provide an excellent product as well as service. I will definitely recommend their product to anyone who is looking for just the right fit for their young pump user.

The My Care Connect website has a lot of functionality for diabetic parents, caregivers, and physicians. Through the website, parents have the ability to connect all caregivers and physicians to their child’s personal blood glucose web-log. Parents can view their child’s blood glucose levels and they can give caregivers and physicians access to this online web-log as well.  All who have access have the ability to enter blood glucose levels, carbohydrate information, insulin dose information, exercise times, and personal notes through the internet and text messages. When any information is entered into the My Care Connect website an email or text message alert is sent out simultaneously regarding the child’s daily diabetic routine.

My wife and I have become more familiar with the website over the past few months. We spoke with our son’s physician and his school nurse about My Care Connect. Our goal with this system is to, ultimately, share our son’s blood glucose levels and insulin dosage without having to fax or contact the physician or the school nurse. We have learned that open communication with our son’s caregivers is very important when it comes to managing his diabetes. 

Please feel free to contact us if you have any questions. We can be reached via email at rcarcelli@yahoo.com.

Sincerely,
The Carcelli Family
(Bob, Kim, Tyler, and Nicholas)

JDRF_Research_Report_Dec_2011.pdf

Here’s how to get involved:

1) Register for the race!

• Register at http://www.clevelandmarathon.com/.  If you have yet to register for the race, please enter our promo code in the “charity code” section of the application form online to receive a discount on your registration fee. 

          Promo code:  2012JDRF – for the Marathon and Half-Marathon
                      JDRFTRACK - for the 10K and 5K

The registration fee increases as you move closer to Race Day (so register early).  Once you have registered, join Team JDRF - an online system that enables you to “run for a cause” or raise funds by participating in the race. 

2)  Join TEAM JDRF! 

• Click http://jdrfevents.donordrive.com/event/clevelandmarathon/ and choose register.  Upon setting up a username and password, you’ll be given your own fundraising webpage which is the opportunity to raise funds for JDRF through Facebook and other social networks-or via letters if you would prefer.  By joining Team JDRF you are NOT tied to any fundraising minimum, NOR are you committed to a training program.  You are solely choosing to support JDRF and crucial type 1 diabetes research through collecting donations from your friends and family.

For questions or assistance through the process, please contact Heather Reed at 216-654-9319 or hreed@jdrf.org.

*NOTE:  you will need to register on both the Cleveland Marathon site and the Team JDRF site in order to register for the race AND raise funds for JDRF.  Registering on the Team JDRF site alone does NOT register you for the Cleveland Marathon.