Monthly Archives: January 2012

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

Take a deep breath!

One of my New Year’s Resolutions is to “pick myself up, dust myself off and start all over again“!!  I decided that in order to do that, I first needed to tell you why I’ve been off the grid for a while and why I need to take a deep breath, pick myself up, dust myself off and start writing all over again!

On August 31, 2011, my husband and I went to bed together, as we have done for the last 45 years.  We watched the 11:00 news and went to sleep.  At 4:00 am, my husband screamed and I presumed he was having a nightmare and tried to wake him.  After calling his name twice and shaking him with no response.  I got up to turn the light on  and when I got back to Bob, his eyes were open, his arms were crossed in front of him and he was as stiff as a rock and convulsing.  I went to grab the cordless phone and, of course, it was not in it’s cradle…I ran downstairs to the kitchen and, of course, that phone was also not where it was supposed to be.  On my 3rd trip up and down our stairs, it finally dawned on me that I could use my cell phone to call for help!

I can tell you that from the moment I was first awakened to Bob’s screams, until the paramedics arrived, was probably the longest 20 minutes of my life.  Our bedroom overlooks the road the paramedics came down to get to our house and while they were doing their best to keep me calm and help me, help Bob by phone, I can tell you that seeing the lights of the fire engines coming down our street was one of the biggest reliefs I have ever felt.

I put our 2 dogs in the bathroom and left Bob’s side to run down to open the door.  When they arrived, there were 4 paramedics and while they were tending to Bob I called our youngest son who lives 2 miles away.   Just as the paramedics had loaded Bob in the ambulance my son came around the corner, I jumped in the car with him and we followed the ambulance to the hospital.  Within 10 minutes our oldest son was in the emergency room with us, Bob was alert, scared and wanting to know what was going on and why he was here and we were waiting for the ER doctor to complete her evaluation and tell us what had happened.

Within 2 hours of arriving, we were told that Bob had a mass on his brain.   He was admitted and we waited until almost 5 o’clock that afternoon before the neurosurgeon arrived and told us his recommended plan of attack.  Because Bob had been taking 1 baby aspirin a day, the surgeon recommended that Bob wait 1 week, stop taking the aspirin and be put on anti seizure drugs and steroids to help harden his brain a little and surgery to remove the mass would be scheduled a week later.  He could stay in the hospital and wait or he could go home…the decision was ours.   Laying in a hospital bed for a week waiting, would have seemed like an eternity, and as long as Bob was not left alone, didn’t drive and took it easy, going home was the obvious choice.

Surgery removed a tumor about the size of a lemon from the right front portion of his brain.  He spent 10 days in the hospital, but was doing incredibly well considering what he and his brain had been through.   He came home from the hospital walking with the aid of a walker.  His memory was better than mine!  (When one of the therapists asked him to recite the alphabet, he recited the Greek alphabet to her, just to shake her up!)  The surgeon said that due to the size of the tumor, and how now, as the swelling subsides, the brain has to work it’s way back from the left to the right side, that Bob will be having a lot of right brain/left brain issues but he will improve.

When the pathology report came back, Bob’s tumor was described as a Class II, which has a higher risk of returning that originally thought so radiation therapy was recommended.  So for the next 6 weeks, 5 days a week we went for radiation treatments and 3 of those days a week, we went for physical therapy as well.  The radiation has made him very tired and he has a crazy mohawk hairdo, but he is walking without even a cane!

We have even made two trips up to Stockton to watch our grandson play some college baseball

and we celebrated the end of radiation by going to Lake Havasu in our motorhome with our youngest son and his family to spend Thanksgiving week as we have done for the last 9 years, camping and fishing!

Because of the seizure, his driver’s license was suspended and that continues to be his biggest issue.  HE HATES ME DRIVING HIM EVERYWHERE!!!  But he recently had an EEG and the results show no seizure spikes, so if he remains seizure free for another month, the doctor will complete paperwork to get his license back.

I have found out that many of the changes I have seen in him over the last couple of years, are most likely due to the tumor and not retirement, as I thought!!

I have learned to do many things that I just counted on Bob to take care of before…paying the bills, mowing our lawn, cleaning our pool, and driving the motor home, just to name a few!!   Things will never be as they were, but they are starting to get back to some new form of normalcy as we enter a new chapter in our lives.    The things that we can still do, we need to do…that is why I need to get back to doing some of the things I did bt (before tumor).   We don’t know what the future has in store for us, but we do know that we are going to make the most of every day!

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Filed under Baseball, Brain Tumor, Grandchildren, Sports, Uncategorized