Tag Archives: Artificial pancreas

#4 I hate you Diabetes

Diabetes…I hate you for what you do and what you take from all of those you have come to live with, but I will never forgive you for coming to live with my grandson.

I hate the day he was diagnosed and we were told you would be with him 24/7 for life, unless a cure was found

I hate that because of you,  his fingertips are and always will be calloused and full of holes

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I hate his Diabetes highs, his Diabetes lows and his Diabetes everything in between

I hate that because of one stupid coach he almost died

I hate that most people don’t understand how much work it takes for him to survive each day

I hate that he can’t eat whatever he wants without first deciding if  having another shot is worth it

I hate that when he does eat…he has to be a mathematician and a clairvoyant

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I hate that he can never forget, even for a moment, he has you on his back

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I hate that everytime I see a child run to the bathroom I think he might have diabetes

but mostly …..

I hate that it was him and not me.  I would have gladly given you my pancreas…Why can’t you take mine and give his back to him?

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Filed under D-Blog Week, Grandchildren, Uncategorized

Breath Test for Diabetes

Blog post #2 

Dear Dr. Galassetti,

Back in 2008, my grandson participated in studies you were conducting at UCI Medical Center.  That research was being done in hopes of eliminating skin punctures for people with diabetes.

As you know, our loved ones, who have diabetes have to test their blood sugars 5 to 10 times a day by pricking their fingers.  You believed that you had the answer to making that process less painful.  This method of measuring blood sugar levels would be one more step in making life just a little easier for them while they wait for their cure.

You collected breath samples from young diabetic athletes while blood sugar levels were high and again as levels fell after insulin was administered. Using a technique developed to test air pollution, you and your researchers detected high concentrations of methyl nitrate — a byproduct of the damage to body tissue — when blood sugar levels are too high and as the blood sugar was corrected, the methyl nitrate levels in their breath went down.

Your technology would allow all people with diabetes to be able to test their blood sugar levels by breathing into a device rather than having to draw blood!  You were encouraged by your results.  But you also said it may take up to 10 years to bring this to market.  UGH!!

Please let us know where you are at in this exciting technology and also let us know if there is anything we can do to help bring it to market and made available for our loved ones!  Do we need to give the FDA another push?  We are getting pretty good at that!  Last month we (JDRF and DOC Advocates) banded together and successfully convinced congress to sign a letter to the FDA urging them to approve outpatient testing of the Artificial Pancreas as quickly as possible!  We’re hoping that out patient testing of the Artificial Pancreas will start this summer!

While certainly not a cure, your device would make the wait for a cure just a little easier and perhaps convince people to test more often.  Just think…   No more test strips!  No more Lancets!  No more calloused fingers!  No more punctures!

Thank you,

Type 1 Advocate Gramma

If you would like to see the short video telling about that research testing, which(by the way) features my grandson, along with bit parts from my grand daughter, son and daughter-in-law..please follow this link.

Breath Test For Diabetes

I’m sorry I can’t figure out how to bypass the advertisements…but it is only 15 seconds and then goes to the feature.

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Filed under Baseball, D-Blog Week, Grandchildren, New Technology, Sports

We Did It!!

I am so excited and proud to be a part of JDRF’s Advocacy Team and the DOC!!

I just received word that our visits, phone calls, emails, and letters to our legislators have paid off this week. We have all been working very hard at getting our Members of Congress to sign onto a letter to FDA Commissioner Hamburg about the need for guidance for artificial pancreas research.

By the time the House letter closed yesterday, 240 Members had signed the letter in the House!   That is a House Majority!!

What a fantastic job all of you advocates have done!!  THANK YOU SO MUCH for sharing your passion with your representatives…They are OBVIOUSLY LISTENING!!!

With your help they will  REMEMBER

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Filed under Artificial Pancreas, Diabetes online Community, Government Day 2011, Promise to Remember, Thank you

A Touching Thank You To to Congressman Royce

For almost a month now, we have been asking our congressmen and senators to sign a letter to the commissioner of the FDA urging them to not delay the outpatient testing of the Artificial Pancreas. Here in Orange County, CA, we have 5 congressional districts and all 5 of them have always presented us with quite a challenge to get them on board with issues concerning diabetes.  As JDRF advocates, many of us have answered JDRF’s call to action and emailed our representatives telling them how important this issue is to us.

Thursday I received word that 2 of our Congressmen had signed the letter, District 40’s Ed Royce and District 46’s Dana Rohrabacher!!!  As the advocate leader for our chapter, I  sent out an email to the  advocates in their respective districts letting them know that their representatives had listened to their request!

One of the advocates, sent a thank you to Ed Royce and cc’d me.  I thought the letter was so beautifully written and held such a powerful message, I asked if it would be alright to share and thankfully she said yes!

Mr. Royce,

Our only daughter has suffered from type 1 diabetes for ten years now;  she is currently 11 years old.  The fact that you signed the letter supporting the artificial pancreas makes a direct difference to our family.  The possibility of this type of management for her diabetes is as close as, I feel, we may get to a cure in her lifetime.  Maybe I have an amazing surprise in store for me one day and there will be a cure, but until then an artificial pancreas is the closest I can hope to have for her.

Your own mother probably thought the same thing about you when you were young, that you would help the world one day.  I am writing today to let you know that you just helped us, with your understanding and concern for our child’s future, and we are forever grateful.

Take care,

Marla Dorsey

If he reads her thank you, I guarantee you he will not forget what she said!

Each one of us can make a difference…Together we will find A Cure..

If you have not yet sent your letter to your Congressman, THE DEADLINE IS TODAY 4/12 Please help us make a difference!  follow this link:   http://takeaction.jdrf.org/apfdacalls

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Filed under Artificial Pancreas, Rohrabacher, Royce, Thank you, Uncategorized

Experiencing the Halls of Congress

Monday, March 14, 2011

Our morning started at 7 am with breakfast, followed by the JDRF staff passing out packets that we would deliver to our Senators and members of Congress,  and a quick review of  our message for the Hill Meetings.

So without further adieu we were are off to catch the Metro to Capitol Hill to roam the halls!   All politics aside, it is a humbling experience to walk the same halls that have been walked by so many men and women that have helped make this country what it is today!

My husband Bob and I had appointments with all five offices of the Orange County members of Congress.  Unfortunately, we  did not get to meet with any of the actual Members themselves, but did meet with their Legislative Assistants and/or Legislative Directors.

  • We told each one of them our personal story of how our grandson’s  diagnosis of Type 1 Diabetes has impacted him and our family.
  • Thanks to many of our advocates at home and the Orange County Chapter’s Junior Ambassadors, we were also able to give each office a stack of letters from their own constituents telling their personal stories and how important a cure is to them.
  • We asked each of them if they or their member had any personal connection to Type 1
  • We reminded them that nearly 26 million Americans have diabetes and that over $174 billion is spent on people with diabetes every year.    We then shared the fact that as a result of better management of diabetes, complications would be drastically reduced, not only would diabetics live longer, healthier lives,  burden on taxpayers would be reduced as well.
  • The Artificial Pancreas will enable people with diabetes to achieve tight blood glucose control and avoid both the highs and dangerous lows, and therefore significantly reduce the risk of complications.
  • We asked them to encourage their Member to sign the letter to the FDA Commissioner Hamburg highlighting the need for guidance on the Artificial Pancreas
  • We asked them to please support the highest funding possible for NIH (National Institute of Health) and FDA (Food and Drug Administration)
  • Congressmen Royce, Rohrabacher and Campbell are not members of the Diabetes Caucus so we told them who they could contact to join and learn more about this horrible disease.

The only one of Orange County’s five  Members  that approved the current renewal of the  Special Diabetes Program Funding was District 47’s Congresswoman, Loretta Sanchez.   We made sure to tell her legislative assistant, Jessica Fernandez to give her a special thank you for her help in keeping the research for our cure alive .  As we met with the other 4 representatives, we did not thank them personally, but we did  tell them that we want to thank CONGRESS for renewing the SDP!

Some of our other California Advocates, including our own Glenn Weber,  met with our 2 Senators, both of whom were members of the Diabetes Caucus, and they had also attached their signatures to the SDP!  (I can also add that both of our California Senators have put their signatures  on the letter to the FDA!!   However, not one of the Congressmen/women have as of today 4/4/11)

All of the meetings left us feeling very comfortable knowing that the Staff promised they would review all the information we had left with them and present it to their Congressman.

We concluded our last night in our Nations Capitol by celebrating with a group of extremely dedicated and passionate  California Advocates at a restaurant called Utopia.

GREAT COMPANY!! GREAT MEAL!!  GREAT GOVERNMENT DAY 2011~~

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Filed under Campbell, Government Day 2011, Junior Ambassador, Miller, Rohrabacher, Royce, Sanchez

Our Mission on Capitol Hill 2011

Sunday, March 13

After a short break for nature’s necessities, we settled back into our seats to find out exactly what our mission was going to be when we head off to Capitol Hill.   For several weeks prior to leaving for DC we had been calling, emailing and faxing our representatives offices in DC, hoping  to make an appointment to meet personally with the Congressmen, but having to settle for meetings with their aides if they were not available.  Before we head off to keep those appointments, we will be coached on what to say, how to say it  and what our we hope to accomplish in these meetings.  So let’s get started……

First of all, we need to thank Congress for approving the Special Diabetes Program!!  In December, Congress  approved the funding of $300 million for Type 1 Research, which is a 2 year extension of a program that was already in force but in jeapardy.   With all the cuts happening in government, having this  program approved was huge for the continued critical research by NIH.  JDRF  furnished us with a document that shows who supported the SDP and who did not, but we are not here to make waves, we are here to try and educate all of our representatives about Type 1 Diabetes and encourage them to support our causes in the future…So we will thank Congress as a whole and move forward!!

One of JDRF’s current focus issues is getting the FDA to approve the outpatient testing of the artificial pancreas (http://www.jdrf.org/intranet/index.cfm?fuseaction=home.download&resourceFileID=DA118D0F-1321-C834-0362EBB714021EE9).   JDRF began working with the FDA about 5 years ago and the Artificial Pancreas was placed on the Critical Path list in 2006.   Currently, researchers can conduct clinical trials in hospitals and there are 12 in-hospital studies approved.  The next step in getting the artificial pancreas approved is through outpatient testing.   The FDA now needs to issue guidelines for researcher to follow stating their expectations and provide a pathway for research and product development”  The longer it takes the FDA to issue guidelines, the longer we have to wait for results and ultimately new and better treatment devices for our loved ones.

In order to speed that FDA process, the JDRF  worked with researchers and other experts throughout the world, to draft a document that the FDA could issue immediately. In other words, JDRF drafted the document for the FDA and now the FDA just needs to approve this guidance document (http://www.jdrf.org/intranet/index.cfm?fuseaction=home.download&resourceFileID=DA1412C0-1321-C834-03E5FE656D059121) and outpatient trials can begin immediately (JDRF and NIH are hoping to start outpatient trials THIS SUMMER)!!  To make sure this is approved right away and not buried on someone’s desk,  JDRF is asking members of Congress to sign a letter urging the FDA to issue their requirements right away.   The FDA doesn’t want Congress to be unhappy with them, so the more signatures on this letter, the better!

That’s were we come in!  JDRF has sent this letter, via email, to all our representatives..we going to give them a copy of this letter and we are going to tell them our personal stories of Type 1 Diabetes and ask them to please sign on to this letter!!

And our third issue will be asking our representatives, if not already a member, to please join the Diabetes Caucus!  If you would like to see if who is a member..check it out.  CaucusLists_Final There are 2 tabs…one for the Senate and one for Congress!

We have now been given our mission for the upcoming days on the hill and it’s time to break for lunch!  What an awesome opportunity this is to actually see how each and every one of us can make a difference!

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Type 1 Research Update

Sunday, March 13, 2011

What an awesome thing the internet and streaming video are!  After the Awards Dinner last night,  thanks to live streaming video,  I was able to sit in my room and watch my Type 1 grandson play the second game of a double header at his future college in Stockton, CA!  Of course it probably wasn’t the smartest thing for me to stay up til 1 am and then have to set my clock forward for daylight savings time and then get up at 6 the next morning!  But it was so worth it!!

So now, 5 hours later, it was 7 am,  we are eating breakfast on the 16th floor of the Sheraton, watching the sun rise over our nation’s capitol and getting ready for another day filled with information, learning, encouragement and hope for a better future for all Type 1 Diabetics and their loved ones!

Our first order of business was to go around the room and  all 150+ of us, introduced ourselves and shared what our connection to diabetes was and why we had become advocates.   It does not matter what the connection to Type 1 is, each one of  our stories are personal and emotional and the desire for a cure is what drives us all.   After all the introductions had been made, we all took a deep breath and were ready to get to work!

The first presentation of the day was from Judith E Fradkin, M.D., who is the Director, Division of Diabetes, Endocrinology and Metabolic Diseases, National Institute of Diabetes and Digestiveand Kidney Diseases, National Institute of Health (NIH) http://www2.niddk.nih.govand Richard A. Insel, M.D. who is JDRF’s Chief Scientific Officer.

They assured us that  both the NIH and JDRF share the common goal of better treatments and a cure for Type 1 Diabetes!  They explained to us that JDRF and NIH have complementary research programs to ensure funds address key gaps.  They also explained where those funds for this critical research come from.

  • JDRF research funds are raised by families affected by Type 1 Diabetes from across the nation and the world
  • NIH research funds come from 2 sources: Annual Congressional Appropriations and the Special Diabetes Program, which since 1998 has funded over $1.9 billion in Type 1 Research

They reviewed the progress that has been made at the many stages of Type 1 Diabetes and talked about the successes and the  future of research in these areas.

  • Prevention onset of autoimmunity
  • Halting of the autoimmune attack
  • Preserving of beta cells
  • Improvement of glucose control
  • Restoring of beta cell function
  • Prevention, arresting and reversing of complications

They shared with us the fact that the  diagnosis of Type 1 Diabetes is increasing at an alarming rate.  It is doubling every 20 years.  There is a 5.5% increase in Type 1 in children from 0 to 4 years old.  They also told us that in all children diagnosed with diabetes under the age of 10 have Type 1.

And they concluded the morning’s presentation by sharing the progress that both the NIH and JDRF funded research has made and what areas they believe hold the most promise for prevention, better management, reversal and ultimately the cure.

  • There are 7 clinical trials involving Islet transplantation
  • Research is exploring micro and macro encapsulation
  • Beta Cell Regeneration and the possibility of regeneration without Beta Cells
  • New drugs and devices to improve glucose control
  • Diabetic Retinopathy Clinical Research and success in reversal of a form of retinopathy
  • Artificial Pancreas Project

Thanks to research in Type 1 Diabetes, complications from this horrible disease have been drastically reduced.  Eye disease has been reduced 76%, kidney disease has been reduced 50%, nerve disease has been reduced 60% and cardiovascular disease has been reduce 57%.  People with Type 1 Diabetes are living longer, healthier lives.

Even though the cure we all so desperately want and need, does not appear to be right around the corner, we do have the comfort in knowing that, because of this research,  our loved ones will live longer, healthier lives until their cure is found!

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