Tag Archives: research

Forget Me Not!

Two years ago this February I was asked to be our local chapter’s Advocacy Team Leader.  At the time, I had no idea what that entailed, but I knew it was an honor to be asked and I made a promise to do whatever I could to help find a cure for my grandson..so the answer was a no-brainer “Yes”!

It was the middle of JDRF’s Promise to Remember Me Campaign and part of my responsibility was to schedule the “Promise” meetings with our congressmen.  I was able to schedule and meet with 2 of our congressmen.  I was so nervous, but both of those meetings were also attended by a few long time JDRF advocates who helped relieve my apprehension a little.   We shared our stories of living with diabetes, asked them to approve the upcoming Special Diabetes Program, thanked them and the meeting was “in the books”.

A month later I went to Washington DC as Orange County’s representative for JDRF’s Government Day!  One of the first people I met was a young mom from Central California.  She told me about the great “Promise” meeting she had with her Congressman and she told me something else that really stuck with me.  During that meeting, her young son gave his congressman a package of Tic Tac’s and explained to him that those are what he has to eat when his blood sugar is low and he gets shaky!   It was a visual reminder for the congressman to remember him!  Thank you Promise Co-Chair Laurie DeSchryver for sharing that story with me!!

For this Promise Campaign I realized we needed to help all of those voting on our behalf  REMEMBER US after our meetings as well!  My grandson Robby, and the reason for my passion, is now away at college and knowing that he would not be able to attend our Promise Meeting with his congressman.   I wanted to make sure that Congressman Campbell remembered him when he went back to DC and cast his votes so….

Flat Robby and his mom went to the Promise Meeting!

We have taken Flat Robby to 3 Promise meetings now and he has been a big hit at each one!  (Oh, and thanks again Laurie for bringing your Flat Grandma to Government Day last year, another inspiration )!

However, all of the members of congress need to REMEMBER ALL OF OUR LOVED ONES living with diabetes and so with a little help from our

 Silly Hats & Caps Advocacy Group

 we came up with several “leave behind” ideas that we now use and I have been asked to share them with you!!

 We made a bouquets of fabric flowers

 Each flower has the face of one of their constituents who is living with Type 1 Diabetes on one side

And simply ask them to remember on the back!

Promise to

Remember Me!

Caroline

We use a sneaker as the vase, to remind them of JDRF’s Walk to Cure Diabetes!

We have one of the children carry the bouquet and start the meeting by giving it to their congressman.  It helps break the ice and get the conversation started!

I always ask the children attending the meeting if they would like share how they manage their diabetes with the congressman (show off their pump, test their blood sugar, etc).  That too seems to really grab the “members” attention and is a GREAT OPPORTUNITY to teach someone else more about diabetes!

Once the kids have broken the ice for the rest of us….the adults share their stories of how diabetes has affected their lives…as a person with Type 1, as a parent, as a grandparent etc.  At one of our meetings one of the mom’s emptied her purse on the table to show ALL OF THE SUPPLIES she had to carry 24/7 to manage her daughter’s diabetes and have on hand just “in case”!

We always check ahead of time to see if the member is on the Diabetes Caucus, or if they signed the FDA letter, or if they voted for the SDP, etc. and thank them for doing so.  If we have an “ask” we explain what we are asking of them and we leave a packet of informational material that JDRF has made available.  In that packet I always include a page that my grandson wrote the year after he was diagnosed..

Facts about Diabetes

In one day, I test my blood sugar 12 times

In one month, I will test 372 times

In one year, I will test 4,464 times

In my lifetime, I will test at least 424,080 times

I inject insulin into me 5 times a day

In one month, I will inject insulin 150 times

In one year, I will inject insulin 1,825 times

In my lifetime I will inject insulin 173,375 times

 As many as 3 million Americans may have Type 1 Diabetes

Each year over 13,000 children are diagnosed with diabetes in the U.S.  That’s 35 children each and every day!

Diabetes remains a leading cause of heart disease, stroke, blindness, kidney disease and amputations.

Please Help JDRF

 Find a CURE

My daughter-in-law came up with another awesome “leave behind” that we started using for our walk team, but are now using with Promise and other activities as well.

We take lifesaver candies,

attach a picture of someone in our chapter living with T1d and simply say..

Be a lifesaver and help find a cure”

These “Promise” meetings are so important to help put a face to Type 1 Diabetes.  If we can influence even one congressman’s feelings toward diabetes, it could mean the difference in the approval of funding of millions of dollars towards research.  The meetings last no more than 15 to 20 minutes and if we can leave something with them that will continue to remind them what we’ve taught them in that short time….we truly are making a difference!

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Filed under Advocacy, Government Day 2011, JDRF Walk to Cure, Promise to Remember, Silly hats and Baseball Caps

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

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

Dinner with Jeffrey Brewer, President and CEO of JDRF

Sunday Evening, March 13, 2011

After our second day of getting energized, educated and ready for our hill visits that will start Monday morning, we had a short break and then met for dinner and a presentation by President and CEO of JDRF International, Jeffrey Brewer.

Jeffrey  knows firsthand what living with diabetes is like, because his 16-year-old son has diabetes.  He knows what it’s like to not sleep through the night checking blood sugars every few hours because he does that.  He knows about living with a teenager with diabetes and the challenges that brings, and that life with a teenager is a whole different diabetes ball game.  He talked about adolescence being the perfect storm for bad diabetes management and how he and his family were currently living right in the eye of that storm.

He explained how originally JDRF was all about resolving diabetes and finding a cure.   Sadly we have come to realize that finding a cure is not that simple.  This is going to be a marathon, not a sprint.  While we are waiting for the cure we need to develop  new treatments along the way.  He understands the importance that technology plays in dealing with diabetes, and he is working very hard to make sure that the latest and best technology is available to every one of you living with diabetes and he is working very hard to find a Cure!  To hear his thoughts on why the Artificial Pancreas is so important please follow this link and watch his video  http://www.youtube.com/watch?v=wDyTM1rq-dI

He also realizes that adults with diabetes need a place to go and they need someone they can turn to,  as well as the parents of children with diabetes. When someone gets tired of dealing with their diabetes or feels alone because of their diabetes, it doesn’t matter if they are 6 or 60 they need the  support of people who are dealing with, or have dealt with the same diabetes frustrations that you are.

He shared the need to make sure we have a bond with the people we have been supporting and who have been living with the disease.   We (JDRF) are not moving away from anyone, we are embracing everyone.

He also expressed the importance that government relations has on the future of Diabetes Research Funding.  It is imperative that we all do our part to make sure our members of congress understand diabetes and its complications and the role it’s complications have on, not only our loved ones, but the taxpayers.  We need to build relationships with our elected officials so that when they cast their votes, they are remembering us!

After his speech he invited questions and comments from the audience.

Many of those that took to the mike,  thanked him for his leadership, and some just wanted to tell their story and thank JDRF for all they do to encourage research for a Cure.

One of those that took to the microphone was  author of the diabetes blog Diabetesaliciousness   and said  ” Hi, my name is Kelly Kunik, and I used to be a warm fuzzy child with diabetes and now I’m a warm and fuzzy adult with diabetes (for 33 years now) and I blog about living with diabetes. Thanks for welcoming us back to your family table.We’re all part of the same diabetes family, and some families don’t agree on everything, but because we’re family, we have each others back. I believe we need to sit at our family table and give thanks. I know my mother wishes that my sister could be here to blow out the candles on her birthday cake. But she can’t because she died from type 1 diabetes in her early 30’s. Had she had  a diabetes community to support her, I think she’d still be here. So thanks again for welcoming us back, we really appreciate it!”

When my grandson was first diagnosed, JDRF was there and they have been there for our entire family during his childhood  journey with diabetes.  Very soon my grandson will be an adult with Type 1 and I want him to know that JDRF will be there for him then too!

Thank you, Mr. Brewer for your insight and leadership!

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Filed under Government Day 2011

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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Filed under Government Day 2011