Tag Archives: government relations

Multi-purpose Kick Off Luncheon Centerpieces

Because I’m still  on all the things the Silly Hats & Caps have done to help JDRF and the Type 1 Community, this is one of the first things that we were asked if we could help with by our Orange County Chapter.   (You may have seen the picture in one of my earlier posts because the centerpieces were re-used as Promise To Remember Me Leave Behinds too!)

I guess the word had gotten out that some of us Silly Hats were kind of crafty and the Walk Committee was wondering if we could come up with an inexpensive centerpiece for the Walk Kick Off Luncheon!  We talked about ideas the next couple of weeks at our Tuesday breakfasts.  In one of our shopping excursions a couple of us had seen some flowers made out of material that were pretty cute and decided to make something similar to that.

We also decided we wanted to make them a little more personal.  Since at JDRF their “Promise to Remember Me” campaign was in full swing and we are in the process of meeting with members of congress in hopes of putting faces to this crappy disease, we decided to put pictures of some of “our” adults and children living with Type 1 as the center of the flower!

One of our walk sponsors is Ascics shoes and along with giving many pairs to walkers who earned a certain amount of money by a certain date, they had also given the chapter about 30 mis-matched tennis shoes.  What a perfect vase!!

Here in Orange County we have quite a few “JDRF Youth Ambassadors”, young kids with Type 1 Diabetes that volunteer to attended various public events, so we used pictures of them and our Children’s Congress kids…and I copied  pictures of some of our adults from facebook and since “amazing race” winner and Type 1 Diabetic Nat Strand is also one of our own and our Celebrity Walk Chair this year..her face went on a flower as well!

This awesome group of Silly Hats & Caps then divvied up the work to be done and we had our first project off and running!

  • We cut flower centers out of felt in the four walk colors
  • We cut hundreds of squares of all different patterns of material (each flower takes 6 4” x 4” squares)
  • We cut green leaves
  • We hand gathered the material squares and glued them together
  • We painted the tennis shoes bright “walk” colors
  • We printed, cut out and added the pictures to the flower centers
  • Arranged them all into 30 centerpieces and delivered them to the walk committee in plenty of time for the Kick Off Luncheon!

And the finished project looked like this:  

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Filed under Promise to Remember, Silly Hats & Caps, Spreading Awareness, Uncategorized

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

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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Advocacy Awards Dinner

Saturday evening, March 12, 2011

After freshening up I headed back downstairs to the hotel foyer for a reception to meet all the other advocates that have come from all over the United States.  It is so fantastic that all 50 states, including Alaska and Hawaii are represented.   There were  many of us who were here last year, there were many new advocates that were here for the first time and there were also quite a few “boomerangs” that had been active in previous years,  took a break and are now back and ready to hit the hill again!!

It is so inspiring to me to see over 150 people, from so many different regions of the US and so many different walks of life, come together in one place with such passion. That all of them have the same goal… to advocate on behalf of so many living with Type 1 Diabetes and ultimately to find a Cure!

Dinner was served in the South Ballroom, and was followed by Vice President of Government Relations, Cynthia Rice kicking off Saturday night’s awards program.  She and Government Relations Committee Chair, Rik Kirkland introduced last year’s Volunteer Chair of Grassroots Advocacy, Lorraine Stiehl (who, by the way,  is absolutely amazing!) and she presented to us the NEW Volunteer Chair, Camille Nash  .  It was a wonderful evening celebrating the successes of the past year, and announcing of this years award winners.

  • Judy Krtek of the Kansas City Chapter received the Above and Beyond Award
  • Laurie DeSchyver from the LA Chapter won the JDRF Messenger Award
  • Michelle Freedman from the Oregon/SW WA Chapter received the Stand and Deliver Award
  • Jeanne Mansfield (that’s me!!) from the Orange County Chapter won the Thomas Edison award for her Type 1 Talk Presentation
  • Jim Caleca of the Metro Detroit/SE Michigan Chapter received the Team Builder award
  • Rookie of the Year award winners, Stacey Warnick from the Utah Chapter and  Rosemary Fuller of the Eastern PA chapter
  • Advocate of the Year, Mary Horn of the Greater Iowa Chapter
  • Laura Chisholm of the Kansas City Chapter received the At Home on the Hill Award
  • Lifetime Achievement Award went to Gary Henn of the Central New Jersey Chapter

I was surprised and honored to have received the Thomas Edison Award, but was feeling sad that my daughter-in-law Julie was not there to share it with me!   Without her help and inspiration our Type 1 Talk at the Original Fish Company in Los Alamitos, would never have happenedl.  Nor would it have been so successful without Wendi  and Vanessa who made it all possible!

I also have to mention that sitting at the table next to me was a group of  very enthusiastic young men and women who, I could see,  were texting throughout the entire awards presentation!!   At the conclusion of the presentation, several of them came over to congratulate Laurie and I and introduce themselves.  That’s when and how this whole blogging thing all began!!   They were a  group of  9 people representing the Diabetes Online Community (DOC) that had been invited to share their stories and educate us on the impact the online community has in the support of all of those living with diabetes!  As one of the oldest advocates in attendance, I could not let all these youngsters pass me by!!  And so it began…Laurie and Scott promised to get me started and here I am!!

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JDRF Government Relations 101

Saturday, March 12, 2011

My husband Bob and I  arrived in DC and got checked in to the Sheraton National Hotel where we spent the next 4 days with over 150 staff and volunteer advocates.  The view from  our room was absolutely breathtaking!  We could see the Capitol Building, the Washington Monument, the Airforce Memorial, Arlington Cemetery and everything else in between.  We are so fortunate to live in the USA!

Because response to Government Day(s) had been so tremendous, there was not room for Bob to attend the sessions.  We had breakfast with our daughter-in-law’s brother, who is attending George Mason University,  and then they went off to explore DC  and I met with my Grassroots leader, Glenn Weber.   We talked about our goals and discussed strategies for our upcoming visits on the hill with our members of congress.

Our first presentation was  Government Relations 101.   First and foremost the number one goal of JDRF Government Relations is to advocate for research to find a cure for Type 1 Diabetes and its complications.   We celebrated Congress’ funding of $300 million for Type 1 Research along with other legislation that was passed that will impact Diabetes.

We then discussed what our Government Relations Goals are for the immediate future.

  • Continue to garner support for the Special Diabetes Program
  • Accelerate availability of an Artificial Pancreas
  • Support efforts to secure additional funds for National Institute of Health (NIH)
  • Expand embryonic stem cell research policy

We talked about  Grassroots Activities and Goals

Our first presentation was complete and we were off to freshen up before a reception and the Advocacy Awards Dinner!

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