Category Archives: Advocacy

Strike Out Diabetes!

Oh my gosh, have I have a major senior moment!!  As I was writing about all the activities that the Silly Hats and Caps have been up to, I realized that I had totally forgotten to tell about our very first event!

Silly Hats & Caps was created around April of last year.   We had started meeting every Tuesday morning for breakfast and  we had been talking about what we might be able to do to help spread awareness of Diabetes, the need for a cure and how we could bring more people with diabetes together (as you know, there is strength in numbers!).

One morning I got a phone call from my girlfriend and she asked me if I had seen the  latest GROUPON offer!  I hadn’t, but I went to my computer and opened it while I was on the phone with her and there it was!   A great opportunity for a low cost get together, a 2 for 1 bowling package and a really great deal.  So each of us 3 original Silly Hat & Caps couples,  bought 2 groupons and we were on off and running!

From the very beginning of our family’s “D Journey” the name of our family walk team has been “Strike Out Diabetes”.  Strike out as in baseball, but hey…it works for bowling too!

Our local chapter shared the details of our event in their newsletter and posted it on facebook and we, of course, shared the date with our friends and family.

The day finally came…we took our groupons, our helium balloons, some JDRF literature and off to the bowling alley we went!

I’m sorry to say we didn’t have one person other than our 3 families show up for the event…but boy did we have fun!

All three of us Silly Hats & Caps couples had 3 generations represented!!  How very cool is that!! Us grandparents, our children and our grandchildren had a blast!

And in addition to that, what made it all worthwhile????  We’d been bowling about 20 minutes and a man had seen our JDRF balloons and came over to ask about our group.  He approached my daughter in law and said “I saw the balloons..you’re with JDRF? We’re having my son’s birthday party here…my son has Type 1 .”   That was her opening for further dialogue!!  She introduced herself to him and his wife, met the birthday boy and shared with them, her story of living with a child with Type 1 Diabetes.   Robby  met them as well, and told the family how diabetes has not held him back from doing anything he wants, including playing college baseball at a division 1 school!  He and his mom also told them what an important role JDRF has played in our lives since his “D”iagnosis!

Our first official event and we were able to achieve our goal…Have fun while laughing, chatting and helping spread awareness of Diabetes and the need for a cure!  And in addition, we were able to introduce another family to JDRF!!

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Filed under Advocacy, Grandchildren, Silly Hats & Caps, Uncategorized

Our First Silly Hats & Caps Garden Party

We started Silly Hats & Caps with 3 of us girls and our husbands and if we wanted to grow, we needed to figure out a way to reach out and tell others about us and our advocacy!  We knew we would have to hold a fun event that would be free to attend and offer a chance for others to get involved by introducing them to Silly Hats & Caps and JDRF!

One of the girls had been to the garden party of a local Orange County artist who makes beautiful quilted wall hangings http://www.bbquiltscapes.com/.  She told the rest of us about the fun she had attending this party and we decided to meet with the artist and see if she would be willing to show her quilts at our party and allow us to copy of few of her fabulous ideas on hosting a garden party!

She not only agreed to show her quilts and let us use all of her ideas, she made up some neat snap clutch bags with the shape of a JDRF Walk Shoe on the outside and offered to donate a portion of all of her proceeds to JDRF as well!

One of my daughter-in-law’s friends that she has known since elementary school has a beautiful home and yard and offered to let us use it for our garden party!  We were up and running!

In order to keep admission free, we decided to ask everyone to bring their favorite dish and make it a pot luck!  We would provide the drinks and desserts!

So on a beautiful Saturday afternoon in September, we held our First Annual Silly Hats Garden Party!  Hats were not mandatory but we offered  an assortment anyone who cared to wear one!

Barbara was there showing her beautiful wall hangings

and clutch purses!

We had a Reflexologist and a Massage Therapist offering their services for $1 a minute!

We had an incredible variety of absolutely delicious dishes to choose from

and over 40 friends enjoying the food, drink and company of each other!

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Some of our friends even donated raffle items and not only were we able to introduce a new Type 1 family to JDRF at this event, we raised a little money to help with the cure!

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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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