Tag Archives: cure

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

How Peanut Butter and Jelly are helping T1D!!

Let me start by saying…My husband loves playing GOLF!! However, golf is not a cheap game to play! Most of the courses, at least around us, are way out of our budget. But there are a few less expensive, smaller, older courses around…so in order to do what he loves..he swings his clubs at one of those courses, almost every Wednesday morning!

Because he loves golf in any form, and because JDRF and the research they fund is our best hope for our grandson’s cure, he and his golf buddy and fellow Silly Hat & Cap member have volunteered to work at the JDRF’s annual Golf Tournament for several years!

The JDRF Golf Tournament is always held at a beautiful county club, draws lots of players, includes incredible auction items, and brings in lots of money!  They volunteer not only to help a great cause, but also because they love the ambiance of these courses and playing in the tournament is a little out of their price range!  

Last year after JDRF’s tournament, “the boys” decided they would like to hold a less expensive tournament that they and their buddies could afford and also make a little money for JDRF!!  So the planning began.t

It was going to be a “NO FRILLS” tournament.  One that our friends and family could afford to  participate in.   Instead of a sit down meal, they chose a less expensive brown bag lunch! Instead of a beautiful country club, they made arrangements for the tournament to be held at their favorite  municipal public golf course.    They decided that calling it the

“Peanut Butter and Jelly Charity Golf Tournament” 

was quite fitting!

We also called on a few of our friends and were able to get a Flat Screen TV, Blue Ray DVD Player and other smaller items donated for a raffle!

The PP&J tournament was scheduled for October 26 and thanks to our incredibly amazing friends, even though my husband Bob, was unable to help (he had unplanned surgery to remove a brain tumor September 6) it came together beautifully.

The golf course gave us a good price and provided the sack lunches for a low cost as well.  We ended up with 9 foursomes and ALL of the golfers bought tickets for the raffle in addition to paying  their entry fee!

Friends and family came early the morning of the tournament and helped set up and check everyone in.  One of our friends, who doesn’t golf,  acted as Bob’s  driver and drove him around the course so that even though he couldn’t swing his clubs (doctor’s orders), he could still feel a part of the event!

The tournament went off without a hitch!  The weather was beautiful!  Everyone had a great time and they all asked us to make sure we invite them to next year’s tournament!

And best of all,  we made money while doing something we enjoyed and were able to give a nice check to JDRF, which made all the effort we put into the tournament totally worthwhile!

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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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Research in action


Last December, our local JDRF chapter had a research forum with a guest speaker from the Genomics Institute of the Novartis Research Foundation.  It was an awesome presentation by one of the researchers who works directly on JDRF funded projects at their lab in La Jolla, CA.

Information on JDRF funded beta cell therapies  http://www.jdrf.org/index.cfm?page_id=113244  Two New Partnerships in Regeneration Help Drive Towards a Cure Faster

Information on JDRF/GNF Collaboration  http://www.gnf.org/collaborations/jdrf/

At the end of his presentation he had mentioned that if any of us would like to come down to the lab for a visit, he would be happy to show us around.

Well….it took 6 months, but my husband and I finally were able to take our grandson (who has Type 1)  and his sister, our granddaughter (my baker) down to La Jolla for a tour of the lab last week!

What a fantastic experience it was to see, first hand, some of the great things JDRF funded research is doing to find a cure!

One of the main JDRF funded projects that GNF is working on is “beta cell regeneration and SURVIVAL”.  They have modified robots that were originally used in the automotive industry to assemble cars, to enable testing of thousands of compounds at a time on donated pancreas cells.  Basically the robots take a modified petri dish approximately 4″ x 5″ that has 1400 wells in it…that’s right 1400 wells in a 4″ x 5″ rectangular plate..  The robots then dispenses beta cells into each well, and then adds a  different compound or combination of compounds into each one of those wells.  After each step, the robot weighs the dish and then places it in an incubator to grow.  After the desired time…the robot takes the plate out and places it under a microscope and each of the 1400 wells is photographed and analyzed by the computer.  There is certain criteria that needs to be met…the computer then analyzes the information and any promising results are noted and mapped and will then each of those wells will be looked at by the researchers one at a time.

To see just a hint of what these robots look like and the plates that hold these precious cells..please follow this link

http://www.gnfsystems.com

then go to “video” and click on slides “00 thru 04”  to get a taste of our tour (slide 04 is showing one of the petri plates being filled with beta cells).

Of the 1400 cultures in each plate…less than 1% of them meet the requirements to even consider continuing to follow it’s results.   It is beyond looking for a needle in a haystack, and yet these dedicated researchers are beyond committed.  They work tirelessly day in and day out to find that one link that will lead us to a  cure!  They are never without their cell phone and pagers.  When they get a call that there is a donor pancreas on route they drop whatever they are doing and head for the lab.  It makes no difference what  time of the day or night it is…they know there is a very small window in which they can preserve the beta cells and they don’t waste one minute or one beta cell!

They have had some very exciting results and are very encouraged that, in the very near future, there will be some sort of therapy (whether it be a pill you take or some other treatment) that will help prevent the immune system from attacking the beta cells, and a bit farther down the road, there will be some form of drug treatment that will regenerate beta cells and those cells will be protected from destruction!!

This is just one of the many research institutes that JDRF is collaborating with.  I was able to see their enthusiasm and dedication and it gave me even more encouragement that a cure for diabetes will happen…Just not as soon as any of us would like!

 

 

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