An artificial pancreas means so much more to me than just a professional accomplishment @

An artificial pancreas means so much more to me than just a professional accomplishment

This entry was posted by admin on Wednesday, 13 January, 2010

I am absolutely thrilled about this announcement, because the development of an artificial pancreas means so much more to me than just a professional accomplishment. It is very personal, as well.

For over thirty years we have lived with diabetes in the Kowalski family. In 1977, when he was just three, my brother Steve was diagnosed with type 1 and when I was 13, I, too, was diagnosed. It’s been a long road and I say we’ve lived with diabetes not just to represent Steve and me, but rather our entire family – my parents, my other siblings, our spouses and now our kids, who have endured the effects of this disease on our lives.

Thirty plus years with diabetes is a long time. As I think back there are some key events over the years that have had a profound effect on me. First and foremost have been Steve’s struggles with hypoglycemia unawareness. Low blood sugar, as we all know, is the reason why achieving and maintaining a low A1c is so difficult. Sharing a room growing up with Steve and experiencing the traumas of serious lows was what motivated me to choose a career in research. For many years, I was the “hypo alarm” in our house and the sight of a hypoglycemic seizure and someone you love being taken away in an ambulance incapacitated by low blood sugar never leaves you.

For me, I’ve been spared from hypoglycemia unawareness, but the fear of developing diabetes complications has motivated me to try to maintain good glucose control since I was diagnosed. When we were growing up, Steve and I witnessed the devastating effects of type 1 firsthand – our neighbor was completely blinded in her 20’s by diabetic retinopathy. Seeing her with her guide dog and so young was tough. Now, I have kids of my own and have lived with diabetes for over 25 years and while I’m very happy to say that I have avoided complications, I want it to stay that way! I fully expect to be there and be healthy as my kids grow up.

As some of you know, this past November I ran my first New York City marathon. What an incredible experience! The crowd was amazing and it was an incredible feeling crossing the finish line after 26.2 long miles. But, the thing I am most proud of is that three of my siblings and my sister-in-law ran it with me for JDRF. In my fundraising letter I said that I hoped to cross the finish line with my insulin pump and CGM held high. I did it! We did it! The money that we raised will help close the loop and I believe that when I run it again that pump and CGM will be controlling my glucose automatically as I try to run a personal best!

Steve and I have benefitted tremendously from continuous glucose monitors. But the beauty of an artificial pancreas will be that in the times of greatest need – such as a low at night where the CGM alarm is not as effective – there will be an automatic reaction by the system to intervene. I think of the countless seizures that we can prevent and the A1c’s that will be reduced and I just can’t wait!

I’m looking forward to providing some updates on how the artificial pancreas project is going, and getting some ideas from people with type 1 diabetes and their families about what’s most important for you. As you can tell, I’m really pumped about the APP – pun intended

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Don Macinnis says:

January 13th, 2010 at 7:10 pm

On behaf of our son, Nick(12 dx05/12/2008), our daughter, Emily(9)
and our entire extended family we simply say THANK YOU!
Don & Melodie MacInnis

Pam Dixon says:

January 13th, 2010 at 7:59 pm

Your personal story inspires me to continue my fundraising for JDRF. My 15 year-old-son has Type 1 and the artificial pancreas project gives us hope. When we heard the news about partnering with Johnson and Johnson we were thrilled because that means the AP will be available commercially more quickly. Thank you for all your efforts and research!!!!!!!!!!!!!!!!

Larry Fulkerson says:

January 14th, 2010 at 3:58 am

Aaron, as a fellow Type 1, with 40 years of insulin, hypos, CGMS failure, testing every 2-3 hours ( my fingers still deliver blood after a stent added aspirin and plavix to my vitamin daily medications, insulin pumping for 10 years and still subject to nightime hypos……. I’m so happy you are part of this project with your history and understanding of the need, hazards and the expectation of life improvement with completion of this project…

CGMS failed because I could not hear the alarm at night – nor feel the vibration when the pump was notified. AND, when the actual blood sugar testing 3 hours following a calibration was 50 off and 260 off in other situations with Medtronic’s product, now testing every 2 hours (sometimes 3 hours) to maintain blood sugar control…..

If I can participate in clinical, field, or any other type of testing to assist in the completion of the needed studies, please contact me and let me know what I can do…….. I’m retired and have the time to spend to document and participate…..

Best regards,

Belinda Pansky says:

January 14th, 2010 at 5:28 am

Although I have only had Type 1 diabetes for a relatively short time (4) years. It has changed the lives of my entire family, it is a daily struggle as you are well aware of. I want to thank you for dedicating your life to this APP. My personal challenge is guess-timating the carbs in food and gaining all the weight I lost (35 lbs) when I went on the pump! Ugghhhh. I will look forward to hearing more as additional information becomes available.

Jan Rozich says:

January 15th, 2010 at 2:30 am

We read an article about the APP in the Lansing State Journal–our family is so excited. Our daughter, Lisa Klingbiel, was diagnosed at age 6 and is now 45. Her son, Steven, was also diagnosed at age 6 and is now 12. We are so hopeful that this wlll be a benefit to them in their lifetimes. Technology has come a long way from the old days of urine testing.

I know how it is to watch somebody have a “low” and the scariness of watching a seizure. Your description brought back those memories and feelings.

Our family met you at the Southfield, Michigan office when you were there to address the JDRF group a year or so ago–maybe longer. We were a part of the first Lansing JDRF (then JDF)group many years ago and we continue to support the fund raising efforts at the August Walk for a Cure on the MSU campus.

Sincerely,

Jan and Pete Rozich
938 E. Scott St.
Grand Ledge, MI 48837

Pamela Price says:

January 15th, 2010 at 4:20 am

I am as excited as you, Mr. Kowalski! Our 11 yr old son has had type 1 diabetes for almost 6 yrs and we struggle every single day. It’s like being on a roller coaster ride most of the time! He can go from 45 to 450 in one afternoon and then back down again in the middle of the night. Growth hormones can have something to do with it, but there’s so many other factors that it can be, ( I’m sure you know). I look forward to learning more about this project as time goes on! Keep us in mind for any human trials……Way to go JDRF!!!!

Christine says:

January 16th, 2010 at 12:01 pm

Dear Aaron
Thank you for raising money for JDRF
We too are looking forward to the day when an artificial pancreas will available for our son Lucas.

Christine

bonnie bullivant says:

January 16th, 2010 at 1:18 pm

i have had type 1 for 49 years. my beginnings included very little tech and by standards today poor control. i have mild retinopathy,neuropathy and nephropathy. i have attacked this chronic disease with my own self learning, attained a professional status of family nurse practitioner, teach adult ed classes in type 1 and type 2. i am no longer fearful of diabetic associated mortality as i was in my teen and young adult years, (i think because i have lived a busy and normalized life)i currently use the medtronic pump and Real-time CGM. i have unique problems with the CGM that i am in the process of trying to correct. i have dreamed of having an artificial pancreas for 40 years. i do believe this will happen for me and younger folks. i am so happy. this new device will change type 1’s lives so dramatically. Mrs. Bonnie Bullivant

Regina says:

January 16th, 2010 at 4:08 pm

I too am intrigued about this new research but pessimistic about the time-line in seeing this become a reality. I understand how FDA works and that a trial can often take years before the drug (or in this case APP) is even approved, not to mention the fact that other big pharma’s (that deal with diabetic drugs) will do everything in their power to stifen this approval if it endangers their profit margins, I am certain. My son (dx. at age 6 and now 17) is currently using the omnipod (the latest, greatest device, supposedly). I had hoped more would come out of the stem-cell research, but have been disappointed in this as well.

I’ll try to be optimistic for his sake, in hopes that we will see the outcome of this great research become available sooner than never.

Leslie says:

January 17th, 2010 at 3:12 pm

Very exciting news – looking forward to hearing more!

Lisa says:

January 19th, 2010 at 8:27 pm

I am a current user of the Medtronics Insulin Pump and Continuous Glucose Monitoring System. They are VERY close to actually doing this. Does this project involve them?

Susanne says:

January 22nd, 2010 at 1:33 pm

I have two sons that are living with type 1 diabetes. My oldest son has the overnight insulin problem. He is single and lives alone. He will be newly married and my prayers are continually with him. How can I be sure that he can be in line for the artificial pancreas and his brother as well. His brother is suffering from narcoplexy and there are overnight problems as well. Both sons are presently single and live alone. They are both approaching 40 and live miles away from me.

Cynthia Zinn says:

January 23rd, 2010 at 4:11 pm

Hi Aaron,
I too am a type 1 diabetic. I am currently using the Animas One Touch Ping. My main reason for not getting a continuous glucose monitor is that I can’t stand the thought of having to insert and wear 2 seperate devices. I hope there will be a way to combine the 2 units into one and have them both contained in one insertion device? Perhaps this is too much to ask? But, I dread my site changes!
Thanks,
Cynthia

JJ says:

January 25th, 2010 at 8:53 pm

I see this artificial pancreas project as more of a marketing ploy for fundraising than a valuable addition to my life any time soon. This type of research or technolgy has nothing to do with finding a cure….

Bryan Dangerfield says:

January 31st, 2010 at 7:37 pm

Aaron:
Your positive attitude, commitment and passion for finding a cure has been an inspiration to our family. We can empathize with your comments above and appreciate your commitment to making sure seizures and A1Cs are minimized.

Our daughter Rylie, 13, has been diagnosed for two years now and has just begun using the pump. We’ve experienced three night time seizures in spite of our efforts to keep Rylie’s BG at a safe level.

Although we hope a diabetes cure and preventative measures for the pancreas will come along sooner, she is interested in in pursuing a medical research career.

Thank you for your great example.

Bryan

Carrie says:

February 2nd, 2010 at 7:30 am

How exciting for us Type 1 diabetics to see the progress from shots, to pump, to CGM, to an artificial pancreas. Keep up the good work!

Sandi Daubs says:

February 2nd, 2010 at 8:18 pm

Thank you for your inspirational article. My daughter was recently diagnosed with Type 1 in Aug ‘09 shortly after her 9th b-day. She is amazing, great attitude and full of smiles despite the diagnosis. Her A1C was 17 when she was first diagnosed and dropped to 7.0 in December! She started the insulin pump on 1/4/10 and we absolutely love it! We have a JDRF walk coming up at the end of Feb and she has over 100 walkers on her team! I thought everything was going so great until last week. For the first time since she was hospitilized she broke down and was crying. I thought she was getting ready for bed when I found her curled up in the bathroom bawling. When I asked her what was wrong, she said she doesn’t want to have Diabetes any more. It completely broke my heart! I know we haven’t been living with T1DM very long and there are so many others out there like yourself that have experienced so much worse. The artificial pancrease project gives us hope and we are confident there will be a cure in our life time. Thank you, all of the research team, and everyone who is fundraising for research for making this happen!

Jeff Crawford says:

February 3rd, 2010 at 12:19 am

Aaron,

Great to hear you ran the NYC Marathon, thats a true accomplishment, especially for a diabetic! I am also a diabetic who runs and have issues with wearing my pump while running. My goal this year is to complete a marathon, any information you could forward to me on this topic would be appreciated.

Thanks and keep running!
Jeff

Angela Cameron says:

February 5th, 2010 at 2:34 pm

I understand all that you are sayin my son was dianosed at 1, I was only 22 and single at the time with a 3 year old as well. I struggled to lean all I could to take care of him. and I must say it was easy but now that he is 11 and I have a total of 7 children my husband and i struggle, for some reason I can’t get his A1c down, he is very tired of dealing with it and I cant blame him. but I feel like I’m killing by baby some time. I don’t know what to do anymore I worry all the time. He has believed in his heart for as long as I can remember that when he gets 13 God was going to take this away and he would be normal. I pray that in a year a the artifical pancress is fully developed and made available to the public.

Morris Frydman says:

February 12th, 2010 at 3:09 pm

I was diagnosed with Type I diabetes since 1966 when I was 14 years old. It was devastating to my mother who had survived the holocaust and grew up in times when there was no treating this horrible disease. They actually thought that you were doomed and drinking alcohol was the way to lower blood sugar. Needless to say trepidation was a constant in our household. I have always taken the attitude that this disease will not overtake my life or my lifestyle. I was 14 years old when I was told you can no longer eat sweets. I had already lived 14 years eating candy, cake ice cream, etc. and now everything has to change! I have never accepted this philosophy. The only difference between a person without diabetes and one afflicted with the disease, is a functioning pancrease. So we must train ourselves to be able to bypass this functioning organ(pancrease) to doing it’s functions on our own through these miraculous machines that have been created, namely the glucometer, the insulon pump and the if you are fortunate to have one the CGM-continous glucose monitoring system. I have lived with Type I diabetes for 44 years now. I monitor my glucose levels at least 6 times a day by pricking my finger and updating my sensor on my CGM so that I can adjust for high blood glucose levels through utilizing a correction on my insulin pump. I eat candy, cake, ice cream & whatever I want to eat but as a person with a functioning pancrease, I take extra insulin to compenate for it. I have not had any complications from the diabetes other than two laser retinal surgeries for my eyes, but my vision is fine. I believe now and have always believed that living well with diabetes can be maintained by monitoring what you eat with counterbalancing it with additional exercise and/or insulin. We are blessed that we have these tools available to us, let’s use them. It is great if you can always have your blood sugars in a comfortable range, but remember if you check your levels enough, you don’t have to compromise your lifestyle! Live and be happy everyday and check your blood glucose more!!

Pamela says:

February 12th, 2010 at 5:48 pm

I am very excited about this news! Throughout my career, I have cared for so manay people affected by diabetes ~ Their struggles seemed insurmountable at times ~ However, reading about people and families like yours provides great encouragement to others to stay the course and keep the faith! I will be watching for the big breakthrough!

Paula Simcox says:

February 13th, 2010 at 11:29 pm

I have a son who is a newly diagnosed type I diabetic. This has changed our lives, as you know. We are so optimistic that all of these gains towards finding a cure may one day be reality. We support JDRF and are excited to be part of the first Walk for the Cure in our town this April. Thank you for all you’re doing to promote this project!

belavina says:

February 14th, 2010 at 10:32 pm

Great blog! Looking forward to receiving new posts!

amazon coupon says:

February 15th, 2010 at 8:33 pm

interesting article. I would love to follow you on twitter.

Lynn says:

February 17th, 2010 at 4:01 am

I am thrilled to hear about all of these wonderful possibilities. My daughter in law sho is 38 years old was diagnosed at 21 and her sister at 7 years old. I live in fear every day that my two little grandaughters may inherit this terrible disease. My only contribution is donating whenever I can and upon retirement you can be assured I will become a volunteer.

Rachel says:

February 18th, 2010 at 11:22 pm

I sit here with tears in my eyes as I have read your story and the comments that follow. My son was diagnosed March 2009. Reading that you and others understand what our family has been learning to live with this past year is overwhelming. Thank you for your passionate work!

Rickst29 says:

February 20th, 2010 at 1:36 am

Aaron, I have a question regarding the Feb 11 “Update” Announcement, adding Roche as a participant:

The Spirit “Combo” system currently involves a finger-stick meter (the Accu-Chek Aviva). Can you say whether the the CGMS to be used the research is the same Dexcom being used with the Animas, or is another device? If it involves an un-announced new product, please just advise that you can’t discuss it.

Barbara Hanson says:

February 22nd, 2010 at 8:39 pm

I have been a type 1 diabetic for 44 years now and with hypogycemic unawareness (like your brother, Steve) find it to be a frustrating chronic condition. I haven’t driven for over 10 years due to 2 automobile accidents resulting from low blood sugar. I ran head-on into a telephone pole at a curve on a winding hill(after I missed the turn to my street, 2 miles before)and another time drove off of the expressway (probably by instinct). Though I still have a driver’s license, my husband and daughter decided that the world wasn’t safe with me on the road. My daughter said, “Mom, you would never forgive yourself if you killed somebody.” I agreed, so I stopped driving. I would give anything to be able to drive again and have a sense of independence! My new Mini-Med pump from Medtronic has made a big difference in severe lows, but I have frustration rearing its ugly head again by the second denial of a CGM (continuous glucose monitor) by an insurance company. An artificial pancreas would be a blessing for diabetics and their families alike. It’s a wonderful, life-giving thought! Keep up the hope that there will someday be a cure for this dreadful, debilitating disease.

February 24th, 2010 at 2:53 am

The artificail pancreas is exciting to think about! I only wish it could be here right now, for those of us who suffer through the daily roller coaster of blood sugar variations. Just yesterday, my eye doctor reminded me that he would like to see my A1c between 6 – 7. Mine is in the low 7’s. I replied, “So would I; and if my pancrea worked, it wouldn’t be a problem.” I would love to see the docs educated a bit on just how difficult a task this is to accomplish.
I am tired of the expectation that a human being can mimic the intricacies of an organ, but I have not given up hope! This is year 40 for me, and while I have my share of diabetes related problems, I keep holding on for the day when I no longer have to think so hard about diabetes. Your drive to see this become a reality is greatly appreciated.