JDRF Government Day 2014

This is my third JDRF Government day and it was just as special and as important as the first two years.

The format was the same as the previous years.  We had two days of learning about current JDRF issues like the Promise to Remember Me Campaign and the Special Diabetes Program.  This was again followed by two days on Capital Hill meeting with our legislators and education them about diabetes issues and the importance of funding for its research.


There were a few new things this year.  Jill, our GLT, is spending some time in China and was replaced with Paula.  She will be our new Government Relations leader for Ohio, Michigan, Indiana, and Kentucky.


We started the weekend with a research update.  I liked that the trend seem to focusing more on biological than Artificial Pancreas research.  That has always been my preference.  One interesting question on the artificial pancreas did make me feel a little better.  Someone asked Jeffrey Brewer about how an inconsistent continuous glucose monitor could be trusted to run an insulin pump.  The answer was first an acknowledgement of this issue and explaining how the monitor would be more focussed on the direction of the blood sugar swing, more than its actual value.  I was intrigued and relieved by that answer.

We had a nice dinner out on Sunday evening with our group.  We have a nice and varied group with some Type 1s and some Moms of.

Our meetings with the legislators were actually with their aides.  The aides were for the most part very friendly.  Senator Brown's aide was a little short with us and asked some questions on the involvement of the Special Diabetes Program and the "Doc Fix" that were a little beyond our understanding.  Luckily one of the Government Relations staff was with us to field her questions.  Time will tell whether this pairing of the SDP and the Doc fix was a good plan.  The other Aides were friendly, but not very knowledgeable of Type 1 and its issues.  I did my best to change that and to explain how close we are to getting some real relief.

Encaptra delivery system

Monday evening we all enjoyed an update from our CEO and leader, Jeffrey Brewer.  He is a very good speaker and always inspires confidence in our organization and its goals.  This time was now exception.  He began with a long description of what it is like to get a diagnoses of Type 1 diabetes.  I think we were all taken aback by its insightful and heartbreakingly real description.  Even with all of our combined experience, it was a shocking story.  I'm working on getting
an excerpt.

The most exciting part of the whole weekend was having Jeffrey Brewer tell us about and then show us what the newest research development was all about.  The JDRF is working with Viacyte to make an islet cell delivery system.  This device will be loaded with islet cells and inserted under the skin in the upper back.  It contains pores that allow the transfer of glucose and insulin, but not antibodies.  So, insulin will be released, AS NEEDED, in response to the circulating glucose levels.  But, no immunosuppression will be necessary because it will be protected by the sheet's membrane.
Clinical trials might begin as early as this calendar year.

This approach is also underway in a few other sites.  The DRI is working on their version called the Bio Hub.  In Edmonton, Canada, Sernova is working on their Islet Cell Pouch.  They are already in clinical trials.  There are two people on the Islet Cell Recipient Facebook page who are on the list and waiting for this procedure.  In California, the Hanuman Medical Foundation is working on the Islet Sheet.  And in New Zealand,  Living Cell Technologies is working on encapsulated pig islet cells with its Diabecell.  Diabecell is different from the others in that it uses a microencapsulation technique.  The individual islet cells are encapsulated.  The others use macroencapsulation by using some kind of container to house and encapsulate a large amount of islets.

I met Lorraine while waiting for the bus to take us back to the hotel.  We talked for awhile and it turns out she knows Dr. Hering.  She sent him this picture of the two of us.  He sent back a nice reply.  Needless to say, it really made my day!

I had some time to explore between my meetings and went to the Botanical Gardens.  I just loved this synchronized fountain.   These colorful flowers make me long for Spring.


I'm doing alright.  I had a PRA test drawn last week.  It will tell how many antibodies I have been exposed to.

My insulin needs and blood sugars are about the same as pre-transplant.  I'm using about 17-18 units of insulin along with Symlin at each meal.  

JDRF Government Day 2013

I have just returned home after my second experience with JDRF Government Day.  It was again a very informational, social, and fun few days.

view from my hotel room

with Jeffrey Brewer and Angel

The purpose of Government day is to educate the JDRF advocates on the current legislation that involves diabetes topics and then to go to the hill and attempt to convince the legislators of the importance of these issues.  The JDRF was formed in 1970 by parents who could not stand the thought of their children living with this disease for their whole lives and decided to try to raise the money necessary to bring the cure.  Unfortunately, the cure has always been perceived to be 5 years away and there are some disappointments with this.  But, no quitters and the group is a very driven commodity.  More recently, the proportion of Type 1s to parents of Type 1s has increased.  Probably mostly because now the Type 1s have become adults and partly because Type 1 diabetes is more in the open and more people like me have joined late in the game.

This year was a little different for me because I had a companion.  I nominated one of my trusty Promise meeting delegates to go with me and she was accepted.  It was fun having Angel with me and I think she enjoyed it as much as I did.

We tavelled to the Detroit airport in snow and slush and arrived in Washington DC to warmth and sunshine.  It was a good omen and we began our visit with a walk around Arlington cemetery.  From then on it was a very nonstop weekend.

The first thing I did was to find and meet my transplant twin.  Julie and I both celebrate July 21st as our transplant anniversary.  It was a thrill to meet her and when our story was discovered, we were interviewed by the JDRF media team.  I'll post it here when I get a copy.

We had a meeting with Jill, the regional JDRF advocacy leader to learn what was happening both here and locally.  Then it was time for dinner and introductions to the DC staff.  

Dinner out with the regional group

with Camille between meetings

my transplant twin

The following morning, we learned more about the Special Diabetes Program which was renewed at the end of 2012, but only for a year.  We would need to ask for this important program to be continued again.  It provided $150 million/year for cure research and its continuation is important so the the research can continue with no gaps.  The Promise to Remember Me campaign will begin again in August as well.  

Since I am an new ATC (Advocacy Team Chair), I went to some sessions with information on how to do this successfully.  I need to form a team to help me with this.  Our main focus is recruiting more people to become JDRF advocates who will approach their Representatives when there are important issues at stake.  I attended a session on how to find and utilize these advocates and one that will help me maneuver through the website.  Angel is set to be my Recruitment manager and I'll try to find one or two more interested people for other roles.

Monday morning began with a talk by Jeffrey Brewer who is the CEO of the JDRF.  I've seen him before and he always does a nice job of telling about which research projects we are working on and why its important to our cause.  Since I have met and listened to the plight of so many parents of Type 1s, I am more agreeable to the necessity of the Artificial Pancreas Project.  

Then, there was a Power-Point discussion between Jeffrey Brewer and the head of the research.  It was just awesome.  Last year, I was disappointed because some of the statistics on islet cell transplants were off and negative.  This year, they had them right  and mentioned that 50% of patients made it to 5 years with no insulin.  There was also interesting work being done with smart insulin, encapsulation, genetic studies, regeneration, and TrialNet.  All of these directions towards the cure were presented as being helpful and hopeful and not extremely far away.  It was a very positive and motivational morning and I think we were all in the right state of mind to go and speak with our Representatives.

Our senate meetings went well.  Neither Senators Brown or Porter could be there, but we met with their aides who will deliver our message and reading materials to them.  Sen. Porter's aide turned out to be a physician who knew about islet cell transplants as well as the son of a Type 1 father.  So, it was nice talking to someone who knew and understood our plight and goals.

That evening we went out with our regional group to dinner.  It was a nice meal and a very interesting group.  We had a good time.

The next morning, we packed up and headed back to the Hill.  This time to speak with our local Reps.  We did get to meet Congressman Jordan, but the other 2 were meetings with aides.  They seemed receptive and we can only hope that they will pass on our messages as efficiently as we would have.  If not, we will make up for it at the Promise meetings this summer.  :)

JDRF Government Day - meetings on the Hill

After another delicious breakfast (they fed us well), it was time for the research update.  I had been looking forward to this session for obvious reasons and it was indeed very interesting. The research was divided into three sections.
These are the topics that are currently funded by the JDRF.

TREAT

• This included the use of faster insulins and glucose responsive insulin which would only be activated in the presence of glucose.
• The Artificial pancreas project which is the focus of the current Promise campaign.  The FDA has recently released a guidance that will help get it to approval.

PREVENT

• This includes the TEDDY study (The Environmental Determinants of Diabetes in the Young)
• Genetic and environmental triggers of diabetes are being isolated and studied.
• Trial net is the study that tests the family members of Type 1s to see if they possess antigens known to be associataed with diabetes.
• People who have just been diagnosed are treated with immunosuppression therapy in hopes of delaying the onset of severe Type 1 diabetes.

CURE

• Islet cell transplantation is currently funded by the SDP (90%).  It is hoped that FDA approval will help more patients have this option.
• Micro and macro-encapsulation of islet cells is the next step.
• Regeneration of beta cells is another direction.  Progenitor cells are a hope as is the reprogramming of alpha cells to become beta cells.

After lunch we boarded buses and headed for Washington DC.  Today we met with our state senators.  All of the people from Ohio attended.

Our first meeting was in the office of Sherrod Brown(D).  We met with one of his aides who seemed very interested in what we had to say.  It was very similar to a Promise meeting.  We all told our personal stories and then made sure that we asked for the support with specific items.  We asked each legislator to sign a letter of support for the Special Diabetes Program, to support the artificial pancreas project, to vote for financial support of the NIH and the FDA, and to join the diabetes caucus.  It was emotional hearing and telling our stories.  And the JDRF had us very well prepared with our talking points and our literature.  I felt that this meeting went very well.

Our next meeting was in the office of Rob Portman(R).  Again, we met with an aide.  She was polite, but not as interested.  When we asked for financial support she said that it is the Senator's policy not to support one disease over the others.  "It is too much like playing God".  That's hard to argue against and we could tell it wouldn't get us far.

We took a bus back to the hotel and arrived just in time to get ready for dinner.  We were served a nice dinner and enjoyed a nice program afterwards.  Jeffrey Brewer, president and CEO of the JDRF was the speaker and he gave a nice and encouraging talk.  Various awards were presented to some of the advocates.  I didn't know them, but judging by the smiling applause, they were deserving.  It was a very nice evening.

Tuesday morning, we had breakfast, packed up, and again headed for Washington DC.  Today we would be visiting with our Representatives.  We were able to meet with Rep. Latta(R) in person.  He was as friendly and interested as he was in our Promise meeting last fall.  For Reps. Kaptur(D) and Jordan(R), we met with their aides. Both were eager to hear our stories and were attentive as to what we were asking.  Rep. Kaptur had already performed all of the things that we were asking, so it was just a nice time to visit and talk about the importance of our mission with her aide.

After my meetings, I walked around for awhile just taking in the sights and then suddenly it was time to get to the airport and come back home.  The trip was pleasant and I enjoyed just sitting quietly and walking around the airport thinking back on the previous four days of adventure.  I met so many interesting people that I hope to remain in contact with and learned so much about advocacy.

JDRF Government Day - training days

I just returned from Government Day in Washington DC.  It consisted of four days, two days of training and two days of meeting with legislators.  It was full of fun, inspiration, socializing with interesting people, the excitement of meeting with people who can make a difference.

Saturday

Arlington cemetery

I left early in the morning and arrived at the hotel in DC at about noon.  I checked into both the hotel and the conference right away.  There were lots of people there, but none that I knew.  I had a one on one meeting with Jill G., who is the regional co chair of the Promise campaign.  We had emailed and spoken on the phone numerous times, but had never actually met.  She was very nice and got me off to a good start.  She also helped me meet some others advocates from Ohio who I would be spending some time with during the conference.  While I was sitting in the lobby reading over the handouts I had received, Hasan Shaw, the JDRF grassroots advocacy manager asked if he could do a video with me for the website.  He was looking for someone who was here for their first time and I was available.  Here it is.  I also slipped away for a walk around the hotel. It turns out we were very  near Arlington cemetery.


The Ohio people all went out for dinner together.  We took a bus into the city and had a nice dinner at an Italian restaurant.  It was fun getting to know each other and sharing our stories.  Afterwards, we went to the hotel bar and met some of the other people.  Everyone was so interesting and of course, we all had a lot in common.

Sunday
Breakfast was at 7:30, so it was a short night.  I got some breakfast and coffee and carried it into a big meeting room.  I didn't see any familiar faces, so sat next to the person that I had walked in with.  It turned out to be Karen from Bitter~Sweet blog, one of the very people who I was hoping to meet.  We had a nice time talking about our blogging experience.  She is just as nice in person as she seems on her blog.  


Then came the introductions.  Each person introduced themselves and told their own diabetes stories.  Each story was unique and interesting.  There were several families that had two diabetic children, and one with three.  Probably the one that got to me the most was a mother who says that she holds her breath each morning when she goes in to wake up her son.  She always begins the day by checking that he is breathing.  All of the parents spoke of setting alarms to check blood sugars multiple times each night. Several of the type 1s have been diabetic for many, many years.  But in all of the stories, no one was really complaining or asking for sympathy, just telling the specifics.  Very typical and illustrates one of the reasons that most people don't know a lot about the more difficult challenges of living with diabetes.


Next came the information that we needed to prepare for our visits to the legislators on "the hill".  We talked of our goals and some of the issues that we would be explaining to our congress people as well as what we would be asking of them.  We would be asking for renewed funding for the Special Diabetes Program.  This is a program that funds research funding through the NIH for projects involved with things like genetics, environmental triggers, complications, glucose control, and several other issues (like my transplant!).  We also talked about the artificial pancreas project and asking for funding for the NIH and the FDA.  We would also be asking each legislator to please join the diabetes caucus.


An update on the Promise campaign was encouraging.  We are getting close to our goal of 432 meetings.  I have my last one on Tuesday.

We were then given the choice of which sessions we would like to attend.  I chose one on building leadership and one on what to expect at our meetings with congress.  Both were very helpful.

All of the Ohio people then went out for dinner.  We ate at Chef Geoffs and had a great time together.  Afterwards, we walked around the area and ended at the White House.  It was a fun evening.

Preparing for JDRF Government Day

I love it when my online world and my real world collide.  It really has this time.  I am being allowed the opportunity to go to Washington DC to advocate for funding for the cure of diabetes on behalf of the JDRF.  What an exciting way to do something so important for a cause that I believe in so strongly.

In the meantime, I have a lot to learn.  The goal of Government Day is to meet with and convince our legislators to vote for issues that will fund research for diabetes.  I am assigned three local Representatives.  They are the same three that I have either had or are in the process of scheduling Promise meetings with.  Currently I have one meeting with Rep. Jordan set up, a meeting with an assistant of Rep. Kaptur and am waiting to hear back from Rep. Latta's office.  I'm learning a lot about the art of scheduling.

I did an on line training session to help prepare me for what to do when we all get there.  The logistics of getting around with no car will be different.  I'm planning on doing as much walking as I can.

My blood sugars have been quite good lately.  I attribute it in part to having two dogs to walk and care for.  We now have a second dog, Cruise that Gary is fostering and training to become a service dog.  Its a lot of work, but fun to watch the dogs interact, and good exercise for me.  Gary is also participating in the training classes so that we can help each other with both dogs.  Senator is doing well with his training to become diabetes alert dog.  I've created a second blog to document my progress with him here.