Category Archives: Government Day 2011

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

Meeting with some of my Hero’s!!

As most of you know..I am a grandmother and a Type 3 (once removed)!  That is..I do not have diabetes, my children do not have diabetes, it is my oldest grandson that was diagnosed with  Type 1 Diabetes!

As any of my friends and family will tell you, I am the definition of a Mother Hen!  Not necessarily a good thing, but none-the-less it is a part of who I am!!   “D” showed up 7 years ago and threatened a member of my family..  “D” did not just come in and  steal a part of my grandson (his pancreas), it took a piece of all of us and forever changed our family!  I HAD TO do what I could to make “D” give it back!

I volunteered with JDRF (Juvenile Diabetes Research Foundation) and started out just participating in the Walk to Cure Diabetes every year.  Then I became a JDRF Advocate and periodically wrote to my congressman asking him to please do what he could to make sure that diabetes research is funded so that a cure can be found as soon as possible.  And 2 years ago I was asked to be the Advocacy Leader.  Saying “no” is a very hard thing for me to say and thank goodness.  Being the JDRF Advocacy Leader I was invited to attend their Government Day in Washington DC.

And so it began….

At this year’s Government Day, I was introduced to the Diabetes Online Community.  Something I didn’t even know existed!  Listening to all of those young men and women talk about the DOC and the support it gives to its members , I knew I had to learn more.  I think it kind of started as a joke, but somehow this old gramma (thanks to Scott and Kerri) left DC that week with my own blog site and twitter account!

The DOC not only offers support to each other that is beyond description, it is so much more.  It is, in almost every sense of the word, FAMILY!  The members of the DOC laugh together, they cry together, they educate each other, they all love unicorns and cupcakes, they advocate, they vent their frustrations without being judged, they are there for each other 24/7, they encourage each other during tough times and they celebrate the victories!

They live their lives, day in and day out, 24/7 with no vacations from “D” and shout “YOU CAN DO THIS!”  with pride!  Each and every one of you living with diabetes are my heroes!

I am so grateful to George http://ninjabetic.squarespace.com

for inviting me to a D meet-up last Saturday. He is going to be speaking to some of our advocates next month about the DOC and I am so excited!

I got to see Scott http://scottsdiabetes.com/

and not only thank him again for setting me up with my own blog and twitter accounts, but I got to get one of his famous “BIG HUGS”!  He is for sure, one of my biggest heroes!!!

And I got to meet Jenny and her husband http://web.me.com/wyldceltic1

who loves Mac’s, her dogs and music!  She definitely has all things “APPLE”!

and last but not least…..

Brad Slaight aka “Meter Boy” http://www.captainglucoseandmeterboy.com/

who kept us laughing the whole time!  (Not to mention he is “half the man he used to be”!)

Thank you all for your courage, commitment and dedication to the DOC and  for making me feel so welcome at your table!

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Filed under Diabetes online Community, Government Day 2011, Grandchildren, JDRF Walk to Cure, Spreading Awareness, Thank you, Uncategorized

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

Reflections of Government Day 2011

Tuesday, March 15, 2011

After completing our last meeting with Congressman Campbell’s Legislative Director David Malech, we grabbed the Metro to the hotel, grabbed our luggage and headed to the Reagan Airport for our return trip home!

I wish that I was able to put into words the exuberance I feel about this entire experience.  The comraderie is addicting and the experience is unparalleled to anything I have ever done.  To have so many people together with the same passions and goals and willingness to “get r done”  is mind boggling!

I hope that I have been able to give you just a glimpse of the effort JDRF put into making sure we were informed, energized and ready to tackle the sometimes difficult task of convincing our public officials how important better management and ultimately a cure for diabetes is!  With your help, I know we can!!

In closing, I would like to share with you with a video that was put together by another one of the invited bloggers, Allison Blass for Diabetes Mine.  It gives a great overview of the entire weekend, and includes an interview of Orange County’s own Glenn Weber!

watch?v=tVkmqK-ny7w&feature=player_embedded

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

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

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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