Wednesday, April 09, 2008

A Day on the Hill

Wow! Yesterday was an exciting and exhausting day. I was quickly reminded that Capitol Hill is actually a large hill and the place is huge. My feet can attest to the physical efforts of just getting from building to building.

the Executive Director of the RI chapter of The morning began with a trip on the Metro to Union Station. We walked to the Dirksen Senate Office Building where we had a breakfast briefing and heard from two congressmen encouraging our efforts. Then we were off to our meetings. The Rhode Island contingent (myself, Bill Koconis, executive director of the RI chapter of the LLS, and Joe Gildea, a member of the board for the RI LLS and a national member of the Board of Representatives for LLS) had a couple of hours before our first meeting.

Interestingly, it was a busy day in the building we were in since the Senate Armed Forces Committee was grilling General Patreus about when we could start reducing our troop levels from Iraq. There were opponents and proponents of the war, making for some interesting interactions. This hearing did throw us for a bit of a loop because our first meeting scheduled with Senator Jack Reed from Rhode Island was not going to work according to our schedule since he was asking the General questions about Iraq. It turned out, however, that Senator Reed wanted to meet with us and had asked us to come down to the hearing so he could meet us. We were supposed to be escorted there by someone from his staff. When we got to his office, however, we learned that since Senators Hillary Clinton, Barack Obama, and John McCain were all at the hearing, the Secret Service would not allow us in.

At Senator Reed's office, we were soon joined by 5 other people from the National Staff of the LLS. This included the President of the LLS, the Vice President of Public Policy, and several other high-ranking members of the society. In addition, Lynn Aronson, the former Executive Director of the Rhode Island Chapter and currently working for the home office on grassroots advocacy also joined us. She knew Senator Reed well. She also happens to be the aunt of one of my best friends.

Needless to say, with this big crowd, I was a little intimidated. It was my first meeting and I had to give my talk in front of all these people. Senator Reed did not attend the beginning of the meeting, but instead we met with one of his legislative staff. He was a nice guy from Rhode Island who listened closely to what we were saying. I eventually told my story of how my life changed several years ago and why I was now in Washington advocating for the LLS.

Soon after, Senator Reed walked in. He had left the hearings to come and meet with us. He was such a nice man and really took charge of the room. I told him that I was from his hometown and we chatted a little about Rhode Island. Senator Reed was clearly in agreement with all of our initiatives so we were preaching to the choir to some extent. After our discussion on LLS matters, one member of our group asked him about the hearing and Iraq. Senator Reed spoke off the cuff about his feelings about the hearings and what is really happening with the Iraqi government. He has been to Iraq several times and as a former Army Ranger, is well versed in military operations. I found this to be fascinating.

This was an invigorating meeting. It made us feel like we were an important part of the legislative process and that our voices were being heard by the people we elect. It seemed that the whole group was quite pleased with our meeting. One person commented that the meeting was one of the best ones they had ever had with a Senator. We were off to a good start.

The Rhode Island contingent broke off from the larger group and went to our next visit with our newest Senator, Sheldon Whitehouse. We were not scheduled to meet with Mr. Whitehouse, but instead, some of his legislative staff. I did not feel as much pressure during this meeting and was able to speak a little more comfortably. About halfway through our discussion, however, Senator Whitehouse walked in to speak with us. He was very friendly and also on board with our agenda. He seemed interested in attending some of the local events, especially the regatta. We felt that this meeting also went quite well. You can see the picture of all of us above.

We took a little break and walked over to the house of representatives office building. We ended up eating in the cafeteria of the Cannon Building with hundreds of young legislative staffers. I was amazed at the young age of the staff. I quickly realized how influential they were, however. It is likely these young staffers do much of the leg work and advise the senators and congressmen about important issues.

After lunch we met with a legislative staff member from Congressman Langevin's office and later Congressman Kennedy's office. We went through our agenda items and they also seemed to agree with our issues and said they would pass on our message to the representatives.

We had a few hours to kill and we walked around the mall. After walking for some time, we decided to make a stop at the National Gallery of Art. We saw some famous impressionist pieces.

Our last event was a Congressional Honors reception in the Capitol Building. This was an interesting event, combining LLS volunteers and staff with legislators. During the event, we met Senator Ted Kennedy. Senator Enzi and Congresswoman Matsui were honored for their efforts to help the causes of blood cancer research.

We flew home late last night completely wiped out but encouraged by the democratic process. As cliche as it may sound, my voice does count and the politicians actually want to hear it. My view of the political process and certainly the federal government has changed drastically.

Today, as I reflected upon the experience, I was overwhelmed by what I had done. I felt strongly about the issues and realized that my story is an important one to tell. It only further emphasized the mission of the LLS and the reasons for asking for the funding changes for research.

My wife and I had time to discuss the events of the past few days as we drove to Dana-Farber to talk about my latest blood test results with my oncologist. Talk about a role change again. I guess I will always be a patient, but I can add advocate to the list as well.

By the way, my bloodwork remained steady. I still remain in molecular remission with a PCR value of 0.008%. I do not have to go back to Dana-Farber until September, but I head to Portland, OR next month to meet with Dr. Brian Druker again.


Kalar said...
This comment has been removed by a blog administrator.
Anonymous said...

We are so very proud of you ,Jonathan. You again have stepped up and taken this to a level where other people could also benefit from your involvement.
We love you.
Mom and Dad

Anonymous said...

It was so nice to meet you in Washington, Jonathan, and I really enjoyed reading your blog. Our North Carolina group had really good support this year for our "asks" as well and this hasn't been the case in the past two years for us (we aren't preaching to the choir). Both of our senators have signed onto a letter requesting 2% more for the NIH than we asked for! I don't know why there is such a big change this year as there certainly isn't any change in the availability of funds but we won't look a gift horse in the mouth. Maybe it's because it's an election year or maybe they are jump starting the economy with more spending. I too came home excited about the whole trip but also a bit exhausted. That really was quite an experience wasn't it!

Dorothy Emery