Advocacy Day 2010

DC and Virginia, Part 1

Last Sunday I left for the east coast for what ended up being one of my favorite trips in a long time. There were two main parts. The first half of the week, we (my folks and I) were in DC for Pancan’s Advocacy Day where people from all over the country come together to raise awareness and push for funding for pancreatic cancer research from the government. The second half of the week, John Burke joined us and we all went down to Richmond, Virginia to celebrate Alex and Amy’s wedding.

DC

I love DC. It is such an amazing city. Monuments, museums, agencies, and NGOs all just fascinate me. I get excited when I walk by random institutions like the Social Security Administration offices, or the State department, or the Humane Society. I just think it is cool to see the physical buildings where people work on programs that affect all of our lives. Amusement parks, meh. Huge government bureaucracies, awesome. We did not get to do too much sightseeing, but just getting to the places you need to go, you end up passing by some pretty amazing places. I know not everyone gets excited by these sorts of things but it just speaks to me.

Monday was spent training on how to lobby by Pancan. They go over the dos and don’ts for lobbying. Like do tell your representative that you are a constituent and that this issue matters to you. Don’t tell your representative that you think he is a jackass or that you won’t vote for him unless he supports the legislation you are pushing for. Pretty straightforward. JB Jaso signed up and we met up in the morning sessions. It was great to see JB and catch up over the next two days. He is really an amazing guy and I could not believe that it had been 10 years or so since we had last seen each other. We both have been through a lot and it was nice to talk to an old friend who really knows where you are coming from. He is also a great lobbyist, an awesome addition to the cause, and just a fun guy to be around. Sometimes, these gatherings are a little tough for me. Most of the time I generally live in denial of my disease and am just a happy, optimistic guy, but these events put the cancer front and center. Of the 450 or so people who came to DC this year, only a handful are survivors. The vast majority of people have lost someone to pancreatic cancer and some have lost more than one to this disease. Having JB around just made the few days easier to bear. I also got to spend some good time with Chris Calaprice, another young survivor. He is a cool guy and we can commiserate on issues that only a very few people will ever fully understand. Stuff like survivor guilt or dealing with the constant worry that ours lives are much more fragile than most. It was really nice talking to both guys and they really helped make the days positive and enjoyable.


Chris Calaprise and me in the Hart Senate office building. You can follow Chris' amazing crusade to spread awareness of pancreatic cancer at road2acure.org.

One of the obstacles to travel these days is dialysis but I had set up everything in advance and dialyzed in DC Monday afternoon. I kind of like dialyzing in new centers to change things up a bit. Of course there is always a little more stress with a new situation but things generally go fairly smoothly. JB joined me for the second half of my session and before we knew it, time was up and I got to go back to the hotel. The people working at that DC facility were very nice and pretty organized.

Tuesday was the big day. We had a pep talk by Jai Pousch (Randy Pousch’s wife, the guy who gave and wrote the last lecture) and her three young children. Pretty good send off.


Jai Pousch, my folks, JB, and me in front of the capital building. Her three kids are out of the frame but adorable and full of energy.

This year my group ended up meeting only with staffers, not the actual representatives but I think that your cause may end up doing better if it is communicated to the actually representative by a trusted staffer. The usual game plan was for me to tell my story, then another group member would tell their story, then someone would go over some statistics, and finally, someone else would present the ask (support HR 745 and SS 3320 and support an NCI budget of 5.79 billion for FY 2011, I think). My group had meetings with staffers from Mary Bono Mack’s office and Dana Rohrabacher’s office and they went pretty well. The team worked really well together and I was really stoked on how well everyone did. I think we made a pretty convincing case. Later, we heard that Mary Bono Mack co-sponsored HR 745 which was a big step in the right direction. After those meetings, I made my way to the meeting with my representative, Henry Waxman. Representative Waxman is sort of a personal hero to Eva and I and sometimes we think he is one of the few congresspeople that is actually supporting the average citizen. He is the one who recently gave a bit of a tongue lashing to CEO of BP, Tony Hayward. I love when John Stewart plays clips of him on The Daily Show or impersonates him with a mustache taped to a pencil. We had our meeting in his sub-committee room and I think/hope we communicated our cause to his staffer. He is very important because the bill would most likely originate in his committee but that fact may also be the reason that he will not co-sponsor it. He takes a principled stance and never co-sponsors bills that originate in his committee, which makes sense as it is a bit of a conflict of interest. I respect that stance and think that more people should take a real honest look at themselves and various conflicts of interest they may be involved with (MMS and big oil just as an example). I just hope that he brings the bill into the committee if we get over half the total congresspeople to co-sponsor it.

Later in the day, the Rep. Waxman’s staffer showed us his big committee room where the hearing on BP took place just a week or so before. It was really cool. Simple and governmental yet powerful. JB, my folks, and I got to sit in the congresspeople’s chairs. Awesome.


The staffer was sitting in the hot seat when she took this photo.

The rest of the day we took a group picture, had lunch, and then met with aides from our senators offices. It was a long and tiring day but the cause itself gave me a lot of energy. Who knows if we actually influenced anyone, but just being on capital hill, walking/wheeling the halls of power was energy giving for me. By the end of the day I was all fired up and just wanted to keep meeting with people day after day. I realized last year, and felt the same this year, how patriotic I am after this event. I am pretty patriotic most of the time anyways, but after seeing the access that anyone willing to walk through a metal detector can have, I am pro America and pro democracy like no other time of the year.

On Wednesday, I rested and recovered from the day before. In the afternoon I had dialysis and John Burke met us at the center. After my session, we went to dinner with another old friend, John Collin. It was a great dinner and great to catch up with old friends. John B’s research in England is going well and John C’s work on The Real Housewives of DC is coming along, too. I think my dad and I are going to tivo the show to see a little of John C’s work. Who knows, maybe my father and I have been missing out on all these reality shows for the last decade and will find that, deep down, we really enjoy them.

On Thursday, we headed down to Richmond...I will continue later in the week with Part 2.

Thanks for everyone who called in on Advocacy day as part of the national call in. Every call helps. Thanks to everyone who made the trip and lobbied in person in DC. Every person helps. I am so sorry for everyone who has lost someone to pancreatic cancer. I hope our efforts give you some comfort, however minuscule, that maybe we can change things for the better some day.

Take Care and Live Strong,
Tyler