Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Tuesday, May 03, 2005

D.C. Day 5: Lobbying 101 and a View From The Top

Tuesday of Brain Tumor Awareness was devoted to visiting our legislators in D.C. The North American Brain Tumor Coalition scheduled all of us to visit with our representatives and senators, and on Tuesday we started our day with a visit to Randy "Duke" Cunningham, our representative from San Diego.

We were there to discuss the Report of the Brain Tumor Progress Review Group (PRG). The purpose of the PRG was to assess the brain tumor research programs at NCI and NINDS and to make recommendations to further assist the advancement of treatments for brain tumors.

Basically, the PRG was convened in July 2000 and of the recommendations made at that time, few have been implemented in the last four years and people are frustrated.

Brain tumors are the number one cause of death from cancer in children. Although there are many more cases of leukemia diagnosed every year, recent advances in treatment have greatly reduced the mortality rate. That is not true for brain tumors.

When Steven was first diagnosed, I was shocked to hear that the standard treatment for tumors of his type, the most common pediatric brain tumor, was radiation to the whole brain and spine. This treatment is harmful to adults, but is devastating to the developing brain of a young child.

We spoke to Cunningham's aide for about half an hour about the need to address the recommendations of the PRG and other issues supported by the North American Brain Tumor Coalition.

With two hours to wait before our appointments with our senators, we took off for the Washington Monument. Doug had gone down early in the morning to wait in line for the small number of tickets they hand out each morning on a first-come, first-served basis.

The view to the east- the Capitol

A ticket gives you the opportunity to ride an elevator almost to the top of the monument and to look out the windows on the observation deck.

The south view- the Jefferson Memorial

The Washington Monument is 555 feet, 5 1/8 inches tall. The elevator to the top has glass windows filled with argon, and they can make them opaque or clear.

The westerly view - the Lincoln Memorial

On the way up, the elevator traveled very fast and the windows were opaque.

Looking north - The White House

On the way down, the elevator slowed down and they unfogged the glass and we were able to see a number of beautifully carved stones on the inside of the monument, contributed by cities and other organizations who donated monies to help finish the monument.

Top-down view of the World War II Memorial

Back on the ground, we had to dash off to our appointments with the aides for our senators, Boxer and Feinstein. We attended these visits with a woman who lives in the Bay Area of California and works for the North American Brain Tumor Coalition.

Steven and Sean were good sports, especially considering that our Washington Monument visit was in lieu of lunch.

Steven and Sean on the steps of the Supreme Court.

After the senator visits, we took off walking again. We walked to the Capitol and tried to see if we could go into the rotunda, but it was necessary to get a tour ticket from our senators and it was too late in the day to take a tour.

At the entrance to the Supreme Court

The House was in late session, so we walked back to our representative Cunningham's office and secured gallery passes. We walked up to the House gallery and watched the House proceedings for about half an hour before they recessed for dinner. A policeman came in and asked Sean to take his feet off the back of the chair in front of him, then very kindly stayed and chatted with us and answered our questions for half an hour or so.

We thought we'd be pushing it to ask the kids to wait until 6:30 for the House to convene again for their evening session, so we headed out for dinner and back to our hotel.

- Kathleen

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