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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

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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Filed under Government Day 2011