Double Life, Part One

And now for something a little different.
About a month ago, I was contacted by a friend of mine in the Amyloidosis community, who is also on the board of directors with the Amyloidosis Foundation. She asked if I would like to go to Washington DC to attend Rare Disease Week as a patient advocate. I couldn’t say yes fast enough!
I had been hoping to be able to contribute to our cause and this would be an excellent opportunity. And I would get to go on a trip!
That week was last week, from the 23rd, through the 26th.
There were five of us from the foundation: Len, Isabelle, Mary Ellen, Dena and me. Len, Isabelle and I all were patients. Dena and Mary Ellen have lost loved ones to the disease. We also spent a lot of time with Spencer, who works for Prothena, a company working on the development of a new drug targeted at Amyloidosis.
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This, above, is a suit. I scoop litter boxes for a living, so I have never owned one. But I went out and got one!
We arrived on Monday and attended a cocktail party and a screening of the film, “Rare”.
On the schedule for Tuesday was a legislative conference with all kinds of information on what we would doing on Wednesday, which was “Lobby Day”. It was packed with details on the legislative process, new bills being introduced in the House and all about interacting with those in Congress.
That meant I needed to get my Tuesday run in early. The coffee in the lobby was not available until 6:30. I did not get on the treadmill until 7. No, that’s not that early, but it was 4 am California time and I’m not even sure I was awake yet. The streets were too icy for me to have safe run, I figured, so I got my 4 miles in the hard way!
Wednesday was an amazing day! I had no idea how many buildings there are that house the offices of our Representatives and Senators. We had six meetings with staffers. While we did not meet with any of the actual elected representatives, their assistants did seem to take a very real interest in getting the word out to their bosses. The purpose of our meetings was to share our personal stories and ask that they support legislation that supports getting new drugs to the marketplace. There are many roadblocks to getting new drugs developed and put into use for rare diseases. For example, often a large number of patients is needed for clinical trials. It can be next to impossible to find enough people who qualify for a trial when you have disease that affects only a very small percentage of the population. Yet, together, we were strong this week! While we were all representing diseases that are rare, together these diseases affect a lot of people, as there are over 7000 rare diseases. This affects 30 million people! One in ten Americans!
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From left to right: Dena, me and Allyssa, who was representing a type of muscular dystrophy. We were waiting for Nancy Pelosi’s staffer.
I was nervous at first but I quickly relaxed after the first meeting. I like to share my story and if there is one thing I’m an expert on, that’s me. So, I had nothing to worry about.
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In the Hart Senate Building, where Barbara Boxer’s office is.
On Thursday, I had most of the morning free, but I did have another running assignment to get in. I had noted on Wednesday that there was not as much ice on the sidewalks as before, but I awoke Thursday to snow fall. I wasn’t sure what to do, but I had really wanted to get to the White House. After assessing the conditions, I determined it should be any more dangerous than running in the rain, so I made a little jaunt to Barack’s house, which was less than a mile from our hotel. I finished the run on the treadmill, but I later regretted that I didn’t stay outside. It wasn’t that cold once I started to run and I was thinking I could have found a route with fewer street crossings. But it’s all good! Any run is a good run!
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We had one more meeting to attend during lunch on Thursday, and  posed for a group pic with all the attendees of Rare Disease week. Then it was off the airport.
It went by fast. It’s almost a blur now, but it was a fabulous time!
And why my double life, you ask? Well, of all my experiences as a patient, this was a big event and just a few days later, I had another big event of a totally different kind. More on that tomorrow!
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2 thoughts on “Double Life, Part One

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