Tag Archives: grandmother

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

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

Type 1 Talk

Government Day, Afternoon Breakout Session #2, March 13, 2011

One of JDRF’s newer campaigns is Type 1 Talk.  It is a face book application that was put together to facilitate setting up meetings all over the county on World Diabetes Day, November 14, 2010.   JDRF provided a live streaming video that consisted of JDRF staff and volunteers, including  the DOC’s own Kelly Sparling (SixUntilMe) .  They discussed a variety of subjects including the artificial pancreas and treatments, autoimmunity, and outreach/awareness.  If you would like to view that video..here’s the link.

http://apps.facebook.com/typeonetalk/?ref=ts

The hope and purpose of this program was to not only recognize World Diabetes Day, but to build a stronger diabetes community, both online and offline.   They asked for our help in securing locations so that we could  get together and watch the video, meet new friends and just hang out after if we wanted.

With the help of some fantastic advocates from my chapter here in Orange County, CA,  we had a fantastic event.  One of my favorite restaurants, The Original Fish Company in Los Alamitos, offered to let us use one of their rooms for the event.  One of their sons was diagnosed with Type 1 at the age of 2 and with all the demands of the restaurant and raising twin boys, it doesn’t  leave  a lot of spare time, but they wanted to do whatever they could to help raise awareness of this disease and do their part to help find a cure.   Not only did they give us the use of a private room, they set up chairs  for us to watch the live video and they provided us  with the  TV to view it on,  they held a raffle AND provided all the prizes for it and donated the proceeds to JDRF , they made and sold Jello Shots for a Cure and  donated those proceeds to JDRF as well,  and as if that wasn’t enough, they also donated a percentage of the entire days proceeds of the restaurant, as well.  We had over 40 people show up just for the event and we all enjoyed the presentation spread awareness of Type 1 and met new friends.  They were so pleased with the response from the entire community, they have promised to make this an annual event!!

And again it reminded me of two things,  “One person can make a difference” and “If you don’t ask, you won’t get”.   When, as advocate leader,  I was asked if I would organize an event, it was my daughter-in-law and mother of my  grandson with Type 1 that said “Why don’t you send out an email and ask if any of the other advocates would be willing to host the event or  has a room that we could use?”!!  If she had not suggested that, I would not have asked and we would not have had one of the most successful Type 1 events in the country!!   Not only did we meet new friends and families from the diabetes community, over $7,000 was donated to JDRF!

Now, moving forward, JDRF wants to make it easier for us to get to know each other and to get together with people affected by type 1 from our own community.  Using the  Type 1 Talk events tool on facebook, whether as a host or an attendee, it will help us find or start local groups and meet new people.  Whether you’re looking for a support group or a social group, they are hoping we will use this  opportunity to start connecting and strengthening our local type 1 community!

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Filed under Government Day 2011, Type 1 Talk

JDRF Government Day 2011

I am so honored, as a grandmother of remarkable young man who just happens to have Type 1 Diabetes, to be a part of this advocacy process where what we do and what we say and the relationships we cultivate with our representatives can and will have an impact on the lives of all of our loved ones and future generations as well.

I have just come home from being in Washington DC with approximately 180 other empowered JDRF Advocates who converged on Capitol Hill Monday and Tuesday.  My husband and I delivered almost 60 letters to our congressmen.  These letters were  from families affected by  Type 1 Diabetes.  They were written by children with Type 1, adults who have been living with Type 1,  parents of  Type 1’s,  grandparents of  Type 1’s,  friends of Type 1’s and  advocates who just understand how important a cure for this disease is and are reminding their representatives that their help is needed to ensure long and healthy lives for our loved ones.

In addition to hand delivering these letters, we have asked our congressmen, congresswoman and senators to please sign on to a letter to FDA Commissioner Hamburg highlighting the need for guidance on the artificial pancreas.  This  letter encourages the FDA to quickly consider the research framework submitted by JDRF and other leading experts to ensure this process keeps moving forward and  these new technologies will be furthered tested as quickly as possible and made available as soon as possible.  The artificial pancreas has already been tested in hospitals.   Outpatient testing is the next step in the process and we can not wait years to get these trials started.

Part of our training this weekend also included sessions by bloggers who explained how being able to connect to others with similar struggles, as well as sharing their triumphs and just day to day thoughts, had huge impacts on their lives and the lives of their fellow bloggers.  As a JDRF advocate and a  grandparent of a Type 1 Diabetic, I don’t want to be left behind.

With the help of Scott and Kerri, who were so awesome and agreed to “get me started” I am going  to attempt to blog  and be a part of the DOC (Diabetic Online Community)!

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Filed under Government Day 2011