Tag Archives: special diabetes program

Exactly What Does Being an Advocate Mean?

 What is a JDRF Government Relations Advocate?


Who are they?

Juvenile Diabetes Research Foundation (JDRF) Advocates are people just like you and me who want to make sure that diabetes research stays at the top of the  government’s funding agenda.  They are moms, dads, brothers, sisters, grandparents.  Some are rich and some are poor and most of them are somewhere in between.  They come from all different walks of life.  Some have years of education and others haven’t finished high school.  But they all know that researchto find a cure for diabetes is a very important issue and must continue to have money allocated for that research.

JDRF funds much of that research but the United States Government is the world’s largest funder of biomedical research – billions of dollars are allocated every year to its primary research establishment, the National Institute of Health (NIH). Elevating diabetes research to the top of the federal government’s funding agenda – and keeping it there until a cure is found – is JDRF’s primary advocacy goal

What do they do?

All it takes to become a JDRF Advocate is to sign up.  Then every now and then (maybe 3 or 4 times a year) you get an email that asks you to call or email your elected officials.  JDRF gives tells you who to get in touch with, gives you the link or script and all it takes is a minute or two!  My first phone call to my congressman’s office I WAS TERRIFIED!

 But once I made the call, I realized that the person on the other end of the phone was no different than you or me…they were there to answer the phone and give a message to their boss!   All I was doing was leaving that message…

Why be an Advocate?

Why?  Why not?  The only way our loved ones will ever be able to take a vacation from this crappy disease is if a cure is found!  If all it takes to make a difference in speeding that cure is an email or a phone call, why would we not become an advocate?  

Because one phone call really can make a difference.

One email really can make a difference.

Because one vote really can make a difference!

Making phone calls, sending emails and visiting elected officials is so easy, compared to what our loved ones live with every day.  If we can put face to diabetes and change the vote of one congressman or senator…it could make the difference in funding that one research project that would have found the cure!!

To become a JDRF advocate and MAKE A DIFFERENCE please follow this link and sign up today! http://takeaction.jdrf.org/site/PageServer?pagename=Registration_Page

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Filed under Advocacy, Promise to Remember, Thank you, Uncategorized

Research in action


Last December, our local JDRF chapter had a research forum with a guest speaker from the Genomics Institute of the Novartis Research Foundation.  It was an awesome presentation by one of the researchers who works directly on JDRF funded projects at their lab in La Jolla, CA.

Information on JDRF funded beta cell therapies  http://www.jdrf.org/index.cfm?page_id=113244  Two New Partnerships in Regeneration Help Drive Towards a Cure Faster

Information on JDRF/GNF Collaboration  http://www.gnf.org/collaborations/jdrf/

At the end of his presentation he had mentioned that if any of us would like to come down to the lab for a visit, he would be happy to show us around.

Well….it took 6 months, but my husband and I finally were able to take our grandson (who has Type 1)  and his sister, our granddaughter (my baker) down to La Jolla for a tour of the lab last week!

What a fantastic experience it was to see, first hand, some of the great things JDRF funded research is doing to find a cure!

One of the main JDRF funded projects that GNF is working on is “beta cell regeneration and SURVIVAL”.  They have modified robots that were originally used in the automotive industry to assemble cars, to enable testing of thousands of compounds at a time on donated pancreas cells.  Basically the robots take a modified petri dish approximately 4″ x 5″ that has 1400 wells in it…that’s right 1400 wells in a 4″ x 5″ rectangular plate..  The robots then dispenses beta cells into each well, and then adds a  different compound or combination of compounds into each one of those wells.  After each step, the robot weighs the dish and then places it in an incubator to grow.  After the desired time…the robot takes the plate out and places it under a microscope and each of the 1400 wells is photographed and analyzed by the computer.  There is certain criteria that needs to be met…the computer then analyzes the information and any promising results are noted and mapped and will then each of those wells will be looked at by the researchers one at a time.

To see just a hint of what these robots look like and the plates that hold these precious cells..please follow this link

http://www.gnfsystems.com

then go to “video” and click on slides “00 thru 04”  to get a taste of our tour (slide 04 is showing one of the petri plates being filled with beta cells).

Of the 1400 cultures in each plate…less than 1% of them meet the requirements to even consider continuing to follow it’s results.   It is beyond looking for a needle in a haystack, and yet these dedicated researchers are beyond committed.  They work tirelessly day in and day out to find that one link that will lead us to a  cure!  They are never without their cell phone and pagers.  When they get a call that there is a donor pancreas on route they drop whatever they are doing and head for the lab.  It makes no difference what  time of the day or night it is…they know there is a very small window in which they can preserve the beta cells and they don’t waste one minute or one beta cell!

They have had some very exciting results and are very encouraged that, in the very near future, there will be some sort of therapy (whether it be a pill you take or some other treatment) that will help prevent the immune system from attacking the beta cells, and a bit farther down the road, there will be some form of drug treatment that will regenerate beta cells and those cells will be protected from destruction!!

This is just one of the many research institutes that JDRF is collaborating with.  I was able to see their enthusiasm and dedication and it gave me even more encouragement that a cure for diabetes will happen…Just not as soon as any of us would like!

 

 

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Filed under Beta Cell Therapy, New Technology

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