Monthly Archives: March 2011

Promise to Remember Me

Government Day Afternoon Session,  March 13, 2011

One of the important campaigns that the JDRF has, that everyone can  participate in is the “Promise To Remember Me”.   How exciting it is for a young child to get to meet someone in their Government that can help them find a cure!!!

Once a year we  schedule appointments with each one of our representatives in all 50 states.   We meet personally with the member of  Congress from our District, invite as many  families as would like to come, tell them our personal diabetes stories and ask them to please remember “US” when voting on important issues affecting diabetes and diabetes research.

Getting that appointment can be a bit of a challenge!  Most members require that a constituent make and attend the appointment.  That is where the help from advocates though out the US is so important, and another instance of  how one person can make a huge difference.  Since the meetings are held in each members district, it has to be done when they are “in town”.   They are on recess the entire month of August, so that is a perfect time to try to secure a Promise meeting.   We start with emailing or faxing our request for a meeting, and then follow-up with phone calls.  We make sure the scheduler knows that his constituents will be attending the meeting and we let the scheduler know that we will be checking in periodically to see if that appointment has been made.  Even though we are their boss, many of them take a lot of  urging to secure those appointments!!  And if phone calls and emails aren’t getting that appointment with your Congressman, here are a few more ideas.

  • Enlist the help of more people in your district
  • Hands deliver a request and/or a drawing from a child
  • Contact the legislator’s DC office and enlist their help
  • Do google searches for meetings they might be having, have “your group” attend his meeting and ask for a photo with him.  He/She might even give you some time!!

If an advocate is  lucky enough to secure an appointment, no matter when it is or where it is, TAKE IT!  The Grassroots Staff and Leaders will make sure that someone is if you can’t be.

Congresswoman Loretta Sanchez

Promised to Remember Us!

If you would like to participate in this campaign, please click on this link  Last year we held over 430 Promise Meetings and I’m sure that is a big part of why the Special Diabetes Program which funded an additional $150,000,000.00 a year,  for the next 2 years, for diabetes research, was approved.   We would love to have your help and secure even more this year!


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Bloggers Round Table

Sunday afternoon, March 13, 2011

After lunch, we were broken up into 2 groups.  Half of the advocates went downstairs to meet with one group of bloggers and the other half  of us stayed on the 16th floor and were going to learn exactly what the Diabetes Online Community (DOC) was all about,  from the rest of the bloggers.  Fortunately for me, the group I had been assigned to, included Scott and Kerri who had set me up with my own blog site yesterday!!   In addition, it just so happened to be the presentation that JDRF was going to video feed live out to the world!

Thankfully JDRF  and their fantastic staff there in DC, had the foresight to know that the DOC is growing by leaps and bounds.   It is imperative that we realize that our children are our future, and that our children grow up to be adults with Type 1 and that as adults they need to know they are not alone and that we are fighting for their cure too!   That is where these wonderful young men and women bloggers come in!  Before this presentation, just in talking to them, they had told me that they all had decided to start blogging about Type 1 Diabetes because they felt alone.  I know that none of us would ever want anyone, but especially our loved ones to feel that way.   With that said, I will move on to the presentation details!

First, I let me introduce the 5 bloggers and tell you a little about each them.  I would also like to invite you to check out their blog sites by clicking on their link listed under my blogroll.

Scott Johnson (Scotts Diabetes) was diagnosed with Type 1 in April, 1980.  He started blogging in 2004 and his writing evolved into a way for him to cope with his diabetes.

Kerri Sparling (SixUntilMe) has been living with Type 1 Diabetes for over 24 years, just before she started the 2nd grade.  She manages her diabetes and life by the mantra “Diabetes doesn’t define me, but it helps explain me”.

Kim Vlasnik (Texting My Pancreas) was diagnosed in 1986 at the age of 6.  Until late 2009 diabetes wasn’t something she shared very often.  It was her own battle and in her mind, no one else she know “got it”.

Cherise Shockley (Diabetes Social Media Advocacy) was a newlywed with her husband in Iraq when she diagnosed with Latent Autoimmune Diabetes in Adult (LADA) at the age of 23

Kelly Kunik (Diabetesaliciousness) was diagnosed on Halloween 33 years ago while in the 3rd grade.  Sadly she comes from a long line of Type 1’s.

All of the bloggers expressed their appreciation to  JDRF for the opportunity they have given them and were eager to meet new friends and build new connections, in addition to  explaining to us, what this whole Social Media stuff is and what the Diabetes Online Community is all about!

Social Media is the use of web-based and mobile technologies (cell phones, etc).  It is available 24/7, has relatively no cost involved, is global and it connects people one-to-one or in groups.    The Diabetes Online Community consists of people with an interest in diabetes and use social media to connect to each other by means of:

  • Blogs
  • Facebook
  • Twitter
  • Podcasts, radio, cable TV
  • Other evolving social media platforms

With each of these forms of  online communication, you can find specific diabetes communities or specific topics, you can interact and contribute or you can just read what others have to say.  Effective use of these tools, not only benefits the online community, it can have a huge impact on JDRF as well.  It will enable both the DOC and JDRF to spread the word about changes and initiatives, it will help reach constituents 24/7,  especially those that do not have access to a local chapter, it can provide daily touch points, it can definitely  influence decision-makers, shape conversation and most important,  inspire people to participate.

In short, use of  the Social Media will enable JDRF to reach out to ALL Type 1 Diabetics (young and old), keep them engaged, let them know they matter, contribute to mentoring them as they move through their different stages of life from childhood through adulthood, in addition to keeping JDRF’s fundamental goal of funding the research that will find a cure!

If you would like to view the streaming video taped from this presentation please click on this link.

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Our Mission on Capitol Hill 2011

Sunday, March 13

After a short break for nature’s necessities, we settled back into our seats to find out exactly what our mission was going to be when we head off to Capitol Hill.   For several weeks prior to leaving for DC we had been calling, emailing and faxing our representatives offices in DC, hoping  to make an appointment to meet personally with the Congressmen, but having to settle for meetings with their aides if they were not available.  Before we head off to keep those appointments, we will be coached on what to say, how to say it  and what our we hope to accomplish in these meetings.  So let’s get started……

First of all, we need to thank Congress for approving the Special Diabetes Program!!  In December, Congress  approved the funding of $300 million for Type 1 Research, which is a 2 year extension of a program that was already in force but in jeapardy.   With all the cuts happening in government, having this  program approved was huge for the continued critical research by NIH.  JDRF  furnished us with a document that shows who supported the SDP and who did not, but we are not here to make waves, we are here to try and educate all of our representatives about Type 1 Diabetes and encourage them to support our causes in the future…So we will thank Congress as a whole and move forward!!

One of JDRF’s current focus issues is getting the FDA to approve the outpatient testing of the artificial pancreas (   JDRF began working with the FDA about 5 years ago and the Artificial Pancreas was placed on the Critical Path list in 2006.   Currently, researchers can conduct clinical trials in hospitals and there are 12 in-hospital studies approved.  The next step in getting the artificial pancreas approved is through outpatient testing.   The FDA now needs to issue guidelines for researcher to follow stating their expectations and provide a pathway for research and product development”  The longer it takes the FDA to issue guidelines, the longer we have to wait for results and ultimately new and better treatment devices for our loved ones.

In order to speed that FDA process, the JDRF  worked with researchers and other experts throughout the world, to draft a document that the FDA could issue immediately. In other words, JDRF drafted the document for the FDA and now the FDA just needs to approve this guidance document ( and outpatient trials can begin immediately (JDRF and NIH are hoping to start outpatient trials THIS SUMMER)!!  To make sure this is approved right away and not buried on someone’s desk,  JDRF is asking members of Congress to sign a letter urging the FDA to issue their requirements right away.   The FDA doesn’t want Congress to be unhappy with them, so the more signatures on this letter, the better!

That’s were we come in!  JDRF has sent this letter, via email, to all our representatives..we going to give them a copy of this letter and we are going to tell them our personal stories of Type 1 Diabetes and ask them to please sign on to this letter!!

And our third issue will be asking our representatives, if not already a member, to please join the Diabetes Caucus!  If you would like to see if who is a member..check it out.  CaucusLists_Final There are 2 tabs…one for the Senate and one for Congress!

We have now been given our mission for the upcoming days on the hill and it’s time to break for lunch!  What an awesome opportunity this is to actually see how each and every one of us can make a difference!

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Type 1 Research Update

Sunday, March 13, 2011

What an awesome thing the internet and streaming video are!  After the Awards Dinner last night,  thanks to live streaming video,  I was able to sit in my room and watch my Type 1 grandson play the second game of a double header at his future college in Stockton, CA!  Of course it probably wasn’t the smartest thing for me to stay up til 1 am and then have to set my clock forward for daylight savings time and then get up at 6 the next morning!  But it was so worth it!!

So now, 5 hours later, it was 7 am,  we are eating breakfast on the 16th floor of the Sheraton, watching the sun rise over our nation’s capitol and getting ready for another day filled with information, learning, encouragement and hope for a better future for all Type 1 Diabetics and their loved ones!

Our first order of business was to go around the room and  all 150+ of us, introduced ourselves and shared what our connection to diabetes was and why we had become advocates.   It does not matter what the connection to Type 1 is, each one of  our stories are personal and emotional and the desire for a cure is what drives us all.   After all the introductions had been made, we all took a deep breath and were ready to get to work!

The first presentation of the day was from Judith E Fradkin, M.D., who is the Director, Division of Diabetes, Endocrinology and Metabolic Diseases, National Institute of Diabetes and Digestiveand Kidney Diseases, National Institute of Health (NIH) http://www2.niddk.nih.govand Richard A. Insel, M.D. who is JDRF’s Chief Scientific Officer.

They assured us that  both the NIH and JDRF share the common goal of better treatments and a cure for Type 1 Diabetes!  They explained to us that JDRF and NIH have complementary research programs to ensure funds address key gaps.  They also explained where those funds for this critical research come from.

  • JDRF research funds are raised by families affected by Type 1 Diabetes from across the nation and the world
  • NIH research funds come from 2 sources: Annual Congressional Appropriations and the Special Diabetes Program, which since 1998 has funded over $1.9 billion in Type 1 Research

They reviewed the progress that has been made at the many stages of Type 1 Diabetes and talked about the successes and the  future of research in these areas.

  • Prevention onset of autoimmunity
  • Halting of the autoimmune attack
  • Preserving of beta cells
  • Improvement of glucose control
  • Restoring of beta cell function
  • Prevention, arresting and reversing of complications

They shared with us the fact that the  diagnosis of Type 1 Diabetes is increasing at an alarming rate.  It is doubling every 20 years.  There is a 5.5% increase in Type 1 in children from 0 to 4 years old.  They also told us that in all children diagnosed with diabetes under the age of 10 have Type 1.

And they concluded the morning’s presentation by sharing the progress that both the NIH and JDRF funded research has made and what areas they believe hold the most promise for prevention, better management, reversal and ultimately the cure.

  • There are 7 clinical trials involving Islet transplantation
  • Research is exploring micro and macro encapsulation
  • Beta Cell Regeneration and the possibility of regeneration without Beta Cells
  • New drugs and devices to improve glucose control
  • Diabetic Retinopathy Clinical Research and success in reversal of a form of retinopathy
  • Artificial Pancreas Project

Thanks to research in Type 1 Diabetes, complications from this horrible disease have been drastically reduced.  Eye disease has been reduced 76%, kidney disease has been reduced 50%, nerve disease has been reduced 60% and cardiovascular disease has been reduce 57%.  People with Type 1 Diabetes are living longer, healthier lives.

Even though the cure we all so desperately want and need, does not appear to be right around the corner, we do have the comfort in knowing that, because of this research,  our loved ones will live longer, healthier lives until their cure is found!

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Advocacy Awards Dinner

Saturday evening, March 12, 2011

After freshening up I headed back downstairs to the hotel foyer for a reception to meet all the other advocates that have come from all over the United States.  It is so fantastic that all 50 states, including Alaska and Hawaii are represented.   There were  many of us who were here last year, there were many new advocates that were here for the first time and there were also quite a few “boomerangs” that had been active in previous years,  took a break and are now back and ready to hit the hill again!!

It is so inspiring to me to see over 150 people, from so many different regions of the US and so many different walks of life, come together in one place with such passion. That all of them have the same goal… to advocate on behalf of so many living with Type 1 Diabetes and ultimately to find a Cure!

Dinner was served in the South Ballroom, and was followed by Vice President of Government Relations, Cynthia Rice kicking off Saturday night’s awards program.  She and Government Relations Committee Chair, Rik Kirkland introduced last year’s Volunteer Chair of Grassroots Advocacy, Lorraine Stiehl (who, by the way,  is absolutely amazing!) and she presented to us the NEW Volunteer Chair, Camille Nash  .  It was a wonderful evening celebrating the successes of the past year, and announcing of this years award winners.

  • Judy Krtek of the Kansas City Chapter received the Above and Beyond Award
  • Laurie DeSchyver from the LA Chapter won the JDRF Messenger Award
  • Michelle Freedman from the Oregon/SW WA Chapter received the Stand and Deliver Award
  • Jeanne Mansfield (that’s me!!) from the Orange County Chapter won the Thomas Edison award for her Type 1 Talk Presentation
  • Jim Caleca of the Metro Detroit/SE Michigan Chapter received the Team Builder award
  • Rookie of the Year award winners, Stacey Warnick from the Utah Chapter and  Rosemary Fuller of the Eastern PA chapter
  • Advocate of the Year, Mary Horn of the Greater Iowa Chapter
  • Laura Chisholm of the Kansas City Chapter received the At Home on the Hill Award
  • Lifetime Achievement Award went to Gary Henn of the Central New Jersey Chapter

I was surprised and honored to have received the Thomas Edison Award, but was feeling sad that my daughter-in-law Julie was not there to share it with me!   Without her help and inspiration our Type 1 Talk at the Original Fish Company in Los Alamitos, would never have happenedl.  Nor would it have been so successful without Wendi  and Vanessa who made it all possible!

I also have to mention that sitting at the table next to me was a group of  very enthusiastic young men and women who, I could see,  were texting throughout the entire awards presentation!!   At the conclusion of the presentation, several of them came over to congratulate Laurie and I and introduce themselves.  That’s when and how this whole blogging thing all began!!   They were a  group of  9 people representing the Diabetes Online Community (DOC) that had been invited to share their stories and educate us on the impact the online community has in the support of all of those living with diabetes!  As one of the oldest advocates in attendance, I could not let all these youngsters pass me by!!  And so it began…Laurie and Scott promised to get me started and here I am!!

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JDRF Government Relations 101

Saturday, March 12, 2011

My husband Bob and I  arrived in DC and got checked in to the Sheraton National Hotel where we spent the next 4 days with over 150 staff and volunteer advocates.  The view from  our room was absolutely breathtaking!  We could see the Capitol Building, the Washington Monument, the Airforce Memorial, Arlington Cemetery and everything else in between.  We are so fortunate to live in the USA!

Because response to Government Day(s) had been so tremendous, there was not room for Bob to attend the sessions.  We had breakfast with our daughter-in-law’s brother, who is attending George Mason University,  and then they went off to explore DC  and I met with my Grassroots leader, Glenn Weber.   We talked about our goals and discussed strategies for our upcoming visits on the hill with our members of congress.

Our first presentation was  Government Relations 101.   First and foremost the number one goal of JDRF Government Relations is to advocate for research to find a cure for Type 1 Diabetes and its complications.   We celebrated Congress’ funding of $300 million for Type 1 Research along with other legislation that was passed that will impact Diabetes.

We then discussed what our Government Relations Goals are for the immediate future.

  • Continue to garner support for the Special Diabetes Program
  • Accelerate availability of an Artificial Pancreas
  • Support efforts to secure additional funds for National Institute of Health (NIH)
  • Expand embryonic stem cell research policy

We talked about  Grassroots Activities and Goals

Our first presentation was complete and we were off to freshen up before a reception and the Advocacy Awards Dinner!

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On My Way to JDRF’s Government Day(s)

Friday, March 11, 2011

As I was sitting at the airport waiting to catch my plane to DC to attend JDRF’s Government Day(s), the woman sitting beside me and I started talking.  When I told her where I was going and why, she said that her 12 year old son also has Type 1.  We talked about their struggles with living in rural Texas and having Type 1 and we talked about athletics and how the level of activity affects his bg (blood glucose)  numbers as well as other diabetes related issues. The one thing that really stuck with me was when she told me they weren’t really involved with JDRF or any other diabetes organizations because they did not want the disease to define their son.

The more I think about that statement the more I want The Cure!   I thank God that everyone with diabetes does not feel that way, because if they did, JDRF would never have been formed, research would not have come so far in the management  of diabetes and most certainly The Cure would be even farther away!  But I do understand that not everyone is lucky enough to have the support of their friends and family, nor that everyone has the strength to deal with all of the misconceptions diabetes brings.    All of those people already carrying the burden of living with Type 1 should not also have to worry about being defined by the disease they struggle to control 24/7.

Being an advocate for  those living with Type 1 Diabetes, I am learning that it does not matter whether we are rich or poor, young or old, one person can make a difference!  We all  need to raise awareness of what it is like to live day in and day out with diabetes, not only for the person with Type 1, but all of their loved ones as well.  For their parents, their siblings, their grandparents, their children, their aunts, their uncles, their cousins and their friends.

I boarded my plane with an increased need for more tools to enable me to help make a difference.

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