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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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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 & Caps Write Up!!

Published in JDRF Orange County’s January 2012 Newsletter!

Volunteer Spotlight: Silly Hats & Caps

What exactly is Silly Caps & Hats? Founder Jeanne Mansfield tells us “I had always wanted to be part of the Red Hats’ Society when I retired,” but she gave it a different twist. She started by gathering a group of people with whom she could meet on a weekly basis for a common purpose.  They would share friendship, fun, and camaraderie in the process, and while it began with her close friends, it would be open to anyone who wanted to join.

Their purpose was easy to define: to build awareness of JDRF and type 1 diabetes, and to create opportunities for people to get involved –whether for outreach, friendship, social activities or fundraising.  Jeanne and Bob’s grandson Robby has type 1 diabetes, and they have been involved with JDRF ever since he was diagnosed several years ago.  “One of the big reasons that JDRF was the chosen charity, besides the fact that my friends all know and love Robby and want a cure for him, they also learned that JDRF research is shared and is helping many other auto-immune diseases as well!  They all have family with some form of autoimmune disease and feel that Silly Hats is helping them as well.”

In addition to their regular meetings, they have been engaged in many activities: representing JDRF at volunteer and health fairs, creating centerpieces for our Walk activities, and many grass roots fundraisers, including a garden party, pot lucks, bowling, a cookbook and the first annual Peanut Butter & Jelly Golf Tournament, to name a few. The ideas keep on coming!

So where do the hats come in? “The hats are a real conversation starter.  Every time someone asks who we are, it gives us a chance to share our purpose with them – tell them about type 1 diabetes and why we need to find a cure for our loved ones.”  She adds, “of course, it’s just plain fun to be a little silly and see who has the craziest contraption on their head!”

There were six people at their initial meet-up last April: Jeanne and her husband Bob, their friends Jan and Bob Woolford and Diane and Bob Bratcher.  More people have joined the group, with 22 people showing up to their last gathering.  And according to Jeanne, the more, the merrier!  They meet Tuesdays and 8:30 a.m. at Watson’s in downtown Orange.

Silly Hats & Caps are a great example of how a small group of people with an idea can make a difference.  If you would like to join Jeanne, or have an idea that you would like to pursue, please contact Melissa Soderbloom, our volunteer coordinator.

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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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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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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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