Advocacy Day 1

ALS= Amyotrophic Lateral Sclerosis aka Lou Gehrig’s Disease aka Motor Neuron Disease
ALSA= ALS Association
PALS= Person with ALS
CALS= Caregiver to a PALS


Washington DC ALS Advocacy and Public Policy Conference Day 1 May 14, 2007


Okay, so I have taken long enough to write about DC Advocacy. I am already finding myself praying that I can be around for next year, although I would do it differently next time, but more on that later. Any pictures are courtesy of Marie Castronovo, whose mom was diagnosed recently, and Ellita, my caregiver. My beloved Nikon Coolpix was stolen in my early days of home care, and I bought a cheap Vivitar 2-pixel camera, but I only brought my camera phone with me. Although when Ellita ordered her Sony Cybershot a few weeks ago, I was tempted to follow suit, but I managed to exercise some restraint, convincing myself that I was okay with the camera-phone. So Maria was my angel-paparazza.

So I woke up Monday morning at an obscene 5:15am to be bathed and dressed in time for the 6:55 Access-a-Ride pickup. Ellita had left at 1:00 pm on Sunday, relieved by Gulshan. But Saturday, she had packed most of my stuff. She arrived at my house at 6:30am on Monday, so I had two people helping.

We arrived at Penn Station in plenty of time and met up with Jody Wiesel and Jackie Reinhard from NYC ALSA and Maria Castronovo, whose mom has ALS. We pulled into Union Station in DC shortly before 2:00, and were transported by wheelchair-accessible bus to the hotel. Ellita, Louise, and I checked in at the Marriott Metro Center, and put our stuff down and checked to make sure we had the roll-in shower, which we did. As well as a huge bathroom, with grab bars around the toilet. YAY!!!!!

So we were a little late for the “Roll Call of Chapters”. This was actually more entertaining than I expected. A representative from each chapter came to the front of the room and gave a one-minute talk about their chapter, including but not limited to, how many delegates they had, including number of PALS. For the first time in the four-year history of ALS Advocacy, there were delegates from each of the 50 states, including Alaska and Hawaii. Some chapters encompassed more than one state, and some states, including New York and California, have more than one chapter – eg. NY has the Greater NYC Chapter, which includes N. and Central New Jersey, and the Upstate Chapter, which is basically everything from the Catskill Mountains on up. Each representative was given exactly one minute to speak, and someone rang a bell when the minute was up. At either side was a screen with a map of the state. Remember that bell I mentioned that rang when the minute was up….well it rang to cut off every speaker, except our Kate McNamee who, although not a native New Yorker, must have learned quickly enough how to speak fast, because she came in under that bell. And, by the way, our chapter had the biggest delegation—59.

After roll call, we all went to an outdoor patio for a sumptuous buffet of Asian fusion cuisine. And then off we to the World War II memorial, with the Washington Monument in back of us, and the Lincoln Memorial at a distance in front of us, for the candlelight ceremony. First we heard from Rekha Basu, an Iowa journalist, speak about her husband Rob Borsalino, another respected journalist, who died last year of ALS and left Rekha and two young children. We heard from two former baseball players, and then it was time to light our candles. It was an impressive sight; all the PALS in wheelchairs, with our friends and families ----a sea of candles in the dark. I went to sleep that night exhausted, but so happy I was able to be in DC for such a moving experience.