Thursday, May 6, 2010

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.      


Colleen said...

I've gotten to do two Promise meetings with JDRF and they have been wonderful. During one of them I pretty much spilled my guts to Senator Jim Webb and got pretty emotional telling me about diabetes. And I really think it had an effect! I really do think it makes such a difference to put a face on the cause!

Anonymous said...

What a great experience, can you explain to me what you had to do? Was it all related to Diabetes? We only have 2 meetings set up in Idaho and I am going to consider being involved in one, I just need to know what is expected. It scares me to think they would even consider not funding research any more. I have been hoping for a cure for 33 years!

Kathy said...

I basically told my story about my transplant and the struggles I faced before. I was sent some information by one of the Promise Co-chairs which I studied before the meeting and left with the congressman. I talked just briefly about some of the high points of the funding and how tragic it would be if the funding were stopped or even reduced. I also had two other families there with me who had interesting and compulsive stories to tell. The time went very quickly and it was an enjoyable experience. I am learning more about how important the funding is for the research to have reached this point and how vital it is to reach that place where transplants like mine are safe and available to everyone.