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 advocacy

I had an interesting experience last week.  I got an email from the JDRF advocacy group asking if I would go to my congressman's office to try to convince him to vote for the Special Diabetes Program that is coming up for renewal soon. The meetings are based on a Promise to Remember Me theme.  When I agreed to do this, I thought I was joining a group who was already planning on attending and I would just show up and tell my story.  It turned out that the group consisted of me and whoever we could find to join me.  That proved to be difficult because it was on a Friday afternoon at 2:30.  Most people that I called were either working or had other plans.  I never realized before how few Type 1 diabetics I know.  And those that I did know were all children of friends.  Not a single person of my own generation.  Luckily the JDRF people were able to find two other families to go with me.  The group included a father and daughter, a mother with her diabetic daughter and a sister, and Gary and me.

The meeting went well.  Congressman Latta listened to all of our stories and asked a few questions.  The girls both had pumps and continuous monitors and could speak well about those.  The mother had calculated how many insulin injections her daughter was spared from taking due to having the pump.  I told about my transplant last.  Judging by some of the questions he was asking I could tell that Rep. Latta did not know anything about the procedure.  So I attempted to give him a reason to reconsider his previous "no" vote on this issue. I explained that my experience is living proof that the money is going to something that has been proven to be fruitful.  It would be a shame if the research had to stop now.  We are so close to the cure.   I had been coached to ask if he would commit to cosponsoring the bill at the end of the meeting.  But thankfully the dad beat me to it.  Rep. Latta talked all around the issue without giving an answer, so the dad asked again.  He still wouldn't commit, so we left without our answer.  We did get to take some pictures as we left.

I was asked to follow up this week.  I called his DC office and asked to speak to Rep. Latta's health care aide.  I left a message on her voicemail, and am waiting to hear back.

I've had a few experiences with the JDRF now, and I am increasingly impressed by what I see.  It is a well run institution by very knowledgeable and dedicated people.  The main focus is on finding the cure for Type 1 diabetes.  My transplant was partly funded by the JDRF.  They are into most of the research that I have been watching lately.  They just began funding for Living Cell Technologies in New Zealand, which is the group that is using encapsulated pig islet cells for transplantation.  They are looking into stem cell transplants as well.

This tree radiates a sweet smell and the sounds of bees.      

CMV update

It has been an interesting few weeks.  I have been waiting to write about it until some kind of logical break in the action, but that might be awhile.

I had the lovely colonoscopy which wasn't really all that bad a week ago friday.  It was to determine if I had CMV colitis.  The initial finding was that I do have colitis.  The tissue was sent to Mayo Clinic to do the testing for CMV.  I really thought it would be positive.  It seemed logical that if I have CMV and colitis that they would be linked.  It was decided that they are not.  The cause of the colitis is one of my immunosuppressants, the Cellcept.

So, now the question is whether to change to a new immunosuppressant or to reduce the Cellcept dosage.  The decision is being discussed now by Dr. Bellin and Dr. Hering.  That would be an interesting discussion.  From my perspective, it would be nice to have my stomach back to normal, but my glucose numbers are so good right now.  I hate to risk that the islet cells wouldn't be as compatible with the new drug.  But, I am sure that there are numerous other variables that I am not aware of.  I feel comfortable with whatever these two doctors decide is best for me and the islets.

As for the CMV, it is still lurking, but getting better.  I don't feel as tired anymore.  If I have a busy day, I get very tired, but if I take it easy, I'm OK.  I had my CMV level drawn on Monday and am awaiting the results.  I saw the infection control doctor on Tuesday.  He was not surprised that it was the Cellcept, not CMV, causing the colitis.  He is not convinced that the CMV is causing any problems with me at all.  I'm not sure.  I guess either or both the Cellcept and the CMV could cause the tiredness and weight loss.

This is all complicated but so interesting.  In a strange way, I find that I can be very objective about all of these bumps in the road.  I think its a matter of trusting my caretakers, finding it all so scientifically interesting, and enjoying the relief of not being in the drivers seat of my treatment.  It is all part of being in a clinical trial.  It is not like a trip to the doctor.  There are the obvious risks, but the benefits are very rewarding.

Some of the best benefits are the people I come in contact with.  Check out my blog list.  Also the Northwest Ohio JDRF newsletter came out this week with the 2nd part of my story.  Very exciting.