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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Filed under Advocacy, Promise to Remember, Thank you, Uncategorized

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

Set Free

I started my morning reading a beautiful post from Our Diabetic Life in 3D titled ” Diabetes is a Sailboat”.  http://www.ourdiabeticlife.com/2011/07/diabetes-is-sailboat.html  It’s a story about how having a child diagnosed with diabetes is like putting your child in a sailboat and watching him set sail alone on the high seas.   Meri is a fantabulous  writer and mother of 4 boys, 3 of  them have Type 1 Diabetes.

And after I cried through Meri’s post, , I visited my facebook page….one of my “friends” Melinda had posted a link to a beautiful youtube video about one family’s struggle to set a young whale free from fishing nets.

As I watched that video, http://www.youtube.com/watch?v=EBYPlcSD490&feature=share

I couldn’t help but relate Meri’s blog and the Fishbach family’s challenge of freeing the whale, to the challenge that all the men, women and children who have diabetes also struggle with.  Just as this whale was trapped in the fishing net, they are tethered to diabetes.   As new and better treatments are discovered, it cuts away at the net and allows them a small taste of what it’s like to live life without diabetes, but until the entire net is removed they will struggle to manage their disease and will not be truly free.

I hope and pray that I will live to see the day when my grandson and all of you, who so bravely battle day in and day out,  can  live without needles and pumps and tubing and meters and testing blood sugars and highs and lows and complications from this crappy disease and can breach and tail slap and fin slap, (or dance and sing and shout, if you prefer)  just as the whale did when it was freed!

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Filed under Grandchildren, Hope and Health, Uncategorized

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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Filed under Diabetes online Community, Government Day 2011, Grandchildren, JDRF Walk to Cure, Spreading Awareness, Thank you, Uncategorized

Almost 42 years and our POW is still MIA

Back in the early 70’s, the Vietnam War took it’s toll on thousands of  lives.  Not only were so many of our soldiers and sailors injured or killed, there were countless young men that just went missing.   It was not known if they were taken prisoner or died.  As that list of prisoners of war and missing in action grew so did the need to find these young men.

To draw attention to the fact of so many missing young men,  bracelets were sold  with the soldiers name, rank, and date of when they went missing.  Many of us bought and wore those bracelets and vowed we would only take them off when “our soldier” came home.   My husband and I wore our bracelets with the name of  S/Sgt William Brown,  who went missing on 11/3/69,  for many years.  We wore them for quite a while after the war was over and eventually with little hope we would ever know what happened to Bill,  we decided that we would take our bracelets off, but keep them on a shelf where we would be reminded of him whenever we looked at that shelf.

The traveling Vietnam Memorial Wall (Wall That Heals) came to our home town this week.  Last night, with our bracelet in hand, my husband and I went to visit the WALL.

There is a book available that allows you to look up a name and it will tell you if that name is on the wall and if it is…where their name is located.

With bracelet in my shaking hand I opened the book, hoping NOT to find his name.   There are over 58,000 names in that book…listed alphabetically.  We find Brown, William and there are 7 William Brown’s that died fighting in Vietnam.  I look closer trying to figure out if “our Bill” is in the book…and then I see “date of injury 11/3/69” and I know we have found him.    All these years we had hoped and prayed he was alive.  I can’t tell you the sadness that came over me as we not only found his name on the wall, with the cross before his name, we learned his body has never come home.

It is now our prayer that his family will get closure and his body will be brought home to the country he died for.

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Filed under POW MIA, Thank you, Uncategorized

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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Filed under Beta Cell Therapy, New Technology