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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

Silly Hats and Caps Update!

Last April I wrote about how some of our friends and I had decided to form a sort of advocacy group called the Silly Hats & Baseball Caps.  Well we’ve been meeting for breakfast every Tuesday Morning since then and have we been busy!

With Bob’s surgery and all, I am way behind in filling you in on what we’ve been up to.  But it is high time I start sharing some of the things we’ve accomplished!

  • First of all we have shortened our name to “Silly Hats & Caps”!
  • We have a purpose:

We are trying to make a difference

While having fun

Chatting, Laughing

and finding a Cure for Diabetes

  • We have a face book page http://www.facebook.com/pages/Silly-Hats-Caps/230127823715355  We would love for you to “like us”!
  • We hosted our First Annual Garden Party  http://wp.me/p1qABL-iT
  • We organized and held our First Annual Peanut Butter & Jelly Golf Tournament  http://wp.me/p1qABL-hD
  • We held a bowling get together for family and friends with diabetes  http://wp.me/p1qABL-ko
  • We have made 40 centerpieces for the JDRF Walk Kick Off Luncheon (and are also using a version of them as “leave behinds” for the JDRF Promise to Remember Me meetings with our congressmen http://bit.ly/GA8DWj
  • All of us Silly Hats got together for a wonderful Holiday Party
  • We met at the beach for a little exercise and a great lunch on the Pier
  • We collected favorite recipes from family, friends and JDRF Advocates and put together a Cook Book that we are selling with all proceeds going to JDRF!
  • Our local chapter did a write up on us in their monthly newspaper.  You can check it out here:  http://wp.me/p1qABL-iH
  • We volunteer at health fairs and other events sharing about JDRF and the need for a cure for Diabetes

In the next few days I hope to get you all caught up with more of the details of some of these things we have done!

I have to tell you that not only have we, as a group, accomplished so many things, it is wonderful to be able to meet every week with friends and know that you can laugh  and cry  and hug and share with others just because!!  Just like the DOC, but in person!

When Bob was in the hospital…they were all there, right by our side, laughing, chatting, and praying!  We are eternally grateful for our wonderful SILLY HATS & CAPS!

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

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

With a little help from a Ninja!


August 1, 2011 was the start of JDRF’s Promise to Remember Me Campaign.  The purpose of the “Promise Campaign” is to make sure that all of our legislators remember us and our loved ones living with diabetes when they are making important decisions that will affect anyone living with Diabetes.   It is our hope that by meeting face to face with each of our congressmen and women and senators and telling them how diabetes has affected us and our families, they will be able to put a face to the disease and vote for issues that will make living with diabetes easier, healthier and safer and bring us closer to a cure.

As the advocacy team leader for our local Orange County Chapter, it is one of my responsibilities to make sure we secure appointments with both of our California Senators and all 5 Congressmen.  As with the Promise Campaign, I always feel it is better to do things in person whenever possible.  So my husband and I decided to have a get-together at our home, provide a simple dinner, talk about the Promise Campaign and develop a strategy to accomplish meeting with our representatives.

We sent out the invitation to the advocates from all 5 congressional districts in our area.  We had 25 passionate JDRF advocates join us.   We all shared our stories with each other while eating dinner.  After eating and visiting,  the OC’s and DOC’s very own Ninjabetic, George Simmons gave a great presentation about his journey with diabetes and why advocating for JDRF, diabetes and the DOC is so important.  We then had someone from each of the 5 districts volunteer to get in touch with their congressman and get a meeting with them scheduled!

That was back in the last part of July…Today I am so happy and proud to say that the OC has the most awesome advocates around.  As of this Friday we will have completed 100% of our Promise meetings, 5 for 5 for Orange County!!  Each meeting was attended by awesome advocates who shared their stories of how living with diabetes has affected them and their families.  They have given faces to Type 1 Diabetes and hopefully when these representatives return to DC and cast their votes on issues that affect diabetes care and cure, they will remember these awesome advocates, young and old!

One of the congressmen we met with has a friend who has some major problems because of diabetes.  He “gets it”!   He has seen first hand, why it is so important to find a cure.  He told us that even though there is no money and things are really tough in DC, he is still going to try and get an increase in diabetes research funding next year!!

Two years ago we had a promise meeting with one of our representatives and that person lumped all diabetes into the same pot…saying that the reason for so many new cases of diabetes was because of people’s diets today….Well, this year..you could tell some serious homework had been done…When one of the children was showing how her pump worked, the congressperson shared with us how her parents have the “other kind” of diabetes!  She is starting to “get it”!

We left this bouquet of flowers with pictures of some of each congressperson’s advocates pictures on them and asked them to “PLEASE REMEMBER ME”!

If you had not had the opportunity to attend a “Promise to Remember Me” meeting, I would highly recommend that you contact your local JDRF office or me, to see how you can attend a  meeting in your area.  Whether or not you agree with the Congressman’s political views is not important…but building a relationship with them is.   Putting a face on diabetes is the first step in getting them all to “GET IT”!!

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Filed under Diabetes online Community, Promise to Remember, Spreading Awareness, 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

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