Monday, March 9, 2009

The Week That Was

Holy hell, y'all. I think I deserve a medal for merely surviving last week. (I know for SURE that Michael deserves a medal. Either that, or some very special grown-up time. But given my exhaustion level, he may have to make do with a medal for now.)

The week began with a snowstorm and a tense drive from Philadelphia to D.C. with crummy visibility, and ended with Garrick vomiting spectacularly all over my mother's house. In between, there were visits to Senate and Congressional offices, the launching of a business, the rehearsing and performing of G.B. Shaw's "Heartbreak House", a Board meeting at work, a visit from my brother who lives in Singapore, and a chance to meet Tina. There was also laundry and house cleaning and a cast party. There may have been some wine at some point, but I may have fallen into a coma and can't remember that part clearly.

The advocacy visits in D.C. were very interesting, and contrary to expectation, not at all intimidating. Arlen Specter's office reception area walls are covered with large photographs of him with various luminaries, including one with Martin Luther King (Specter looks about 22 years old in the photo). My meetings were all with staffers, not the reps themselves, but my meeting at my local Congressman's office took place in his actual office due to lack of space -- and his office walls are covered with drawings by his 7-year-old daughter. I like him already.

I had lunch in the cafeteria of one of the Congressional office buildings at about 12:15PM and it was like a mosh pit -- there were literally wall-to-wall people, and no available chairs. I ate standing up next to one of several broken chairs heaped in a corner.

The PKD Foundation has five legislative priorities this year, including Congressionally-directed research funds (of which there are currently zip), getting rid of the 36-month cap on Medicare-sponsored antirejection medication for transplant patients, and raising PKD's profile within the NIH. We got very positive feedback overall, and I think I'm going to be spending more time and energy in this direction in the future.

After a loooooooooooooong nap.


Anonymous said...

Rest when you can. You're doing good and important work.

May you have a lot of Cobb salad this week. :)


Christine said...

That's so cool! I hope they can get things worked through Congress.

Lora said...

Hi! I've been to your blog before, several times! What a small world.
Thanks for the welcome email!

nutmeg said...


Emily said...

So my real job is for a DC association that does a great deal of lobbying. I am not a registered lobbyist but I do all the writing for our lobbyists and hear all of their stories. The fact that you got into see staffers is really great. Sometimes they dont even sit down to meet with you - you have a discussion standing up in the hallyway!!

Congratulations on the trip. I do think these folks listen and given all that is on their plates this months, you must have made a very good impression to get some of their time.

Im sur eyou know the new stimlus bill has billions of dollars allocated to basic research -- lets hope PKD gets some $$.