In early 2002, I received information in the mail (remember mail, besides Christmas cards and junk?) about a group of people who were gathering in Washington D.C. to speak with members of Congress about what it’s like to live with muscular dystrophy, and request funding for “centers of excellence” around the country that would specifically focus on caring for individuals living with Duchenne and Becker muscular dystrophy. The year before, in 2001, President George W. Bush had signed the “M.D. Care Act” and I had been following that story closely. Finally, people were shining a light on the rare disease that I lived with everyday. I needed to take action! How could I help? I was about to learn the word “advocate.“
At the time, I thought that I had Becker, and those who know me understand that I have never met a microphone that I didn’t like….in short….my thinking was: I speak in front of adolescent children for a living. If I can succeed there, Congress doesn’t scare me at all. Of course, my mind saw what we all see on T.V.: Here I am sitting at a low table, in a room with a bunch of media, and a host of important elected officials sitting high above the table quizzing me. Put the bright lights on, I’m down.
Anyway, I went to Washington to meet these people who were going to speak with Congress, and I dragged my mom along. My mother, at the time, was helping me with day to day tasks, and I couldn’t travel alone, so Helen and I went to Washington. I had no clue what we were getting into.
We checked into the hotel and located a table in the lobby that had red and white balloons, name tags and information for us. I was so naive, that I thought we all would just meet somewhere near the big dome on Capitol Hill and knock on the office doors of Senators and anyone who would listen. In my mind’s eye, I thought about how cool it would be to have a photo of me and Senator Ted Kennedy. This is how it works right? WRONG!
Two women sat behind the table and the balloons, all smiles and friendly. They handed me a name badge and a folder and welcomed me to the “patient and family advocacy forum.” I briefly wondered if I had just joined a cult, when another older woman came out of nowhere, telling me that she was so happy that I was here. Her name was Kim. I’m in D.C. 30 minutes and this lady is coming on like the mayor’s wife. What the hell?
Kim ushered my mother and I into a small hotel conference/ballroom where there were about 30 people seated at long tables and talking. We sat in the back, but not all the way back. Just like church…
I turned around to say hello to the people behind me. Their names were Mike, Suzanne, Donna and Catherine. They had thick New Jersey accents and told me about their young son who had been diagnosed with Duchenne MD. They showed me photos of the boy and we got talking. Between the Jersey accents and the weirdness of the whole thing my brain screamed out: MAFIA CULT. Well, not really, but kind of.
Next to this family, a man and woman introduced themselves and overheard me saying that I was from New Hampshire. They were from Maine. Isn’t it a small world? They had 2 young boys living with Duchenne and we got talking about Boston sports, Maine Lobster, the New Hampshire fall and all things New England. The conversation flowed like I had known these people for years. It was very comfortable very quickly.
I had no idea how that weekend was going to transform my life: this was my formal introduction to Parent Project Muscular Dystrophy, the non-profit that I now work for.
The entire group received speaking points and training from a lobbying firm that focuses on health care issues in our country. The firm made appointments with our elected members of Congress. Our job as advocates was to tell our stories about living with MD, do “the asks” and then leave our information for follow up. I thought: “that’s it? No TV? No lights? No Teddy Kennedy?” I was so new, I still had wrapping on me from being taken out of the box.
We went to House office buildings and Senate buildings that surround the Capitol Dome. We learned that all of these buildings are connected by underground tunnels. We learned that thousands and thousands of citizens do what we were doing EACH DAY that Congress is in session, and somedays when they are not.
We learned that actually having a meeting with a member of Congress is unlikely due to their schedules, but meeting their health staff employees works well: you talk, they listen, take notes, and brief the member of Congress about your story and your requests. I learned that our government is shaped by all of these “staffers” who are in their 20’s, running around, writing summaries, briefs, and researching policy language that then informs the elected official.
I went to meetings in the offices of my 2 NH Senators, and 2 NH Reps, and I also went to meetings with Maine, Vermont and Massachusetts citizens.
At the New Hampshire meetings, I spoke and asked for increases in muscular dystrophy funding through the National Institutes of Health, as well as the Centers for Disease Control. I asked to expand the blueprint for Muscular Dystrophy Centers of Excellence so that people like me could receive a higher standard of care. In 2002, doctors across the nation did not agree on what those even looked like. I was well received. The lobbying firm sent an employee with me to the first 2 meetings to make sure that I stayed on message. She told me that I didn’t need her, and that I should go to more meetings. I took that as a positive sign.
She made sure that I was going to come back the following year. I learned that this is how you build relationships with elected officials and their staff members. I told them that as long as I still had muscular dystrophy, I would be back. That was a little joke on the fact that there is no cure.
I learned that every Congressional office is a hive of activity: at least 2 people in the front room answering phones that constantly ring. Behind the “waiting room”, a staff of many in different rooms who meet with constituents, people from other offices, Veterans, and others. At one N.H. meeting, I sat in the waiting room chatting up an 80-something-year-old Navy Veteran who came to talk about benefits and improving Veteran care. Next to him were a small group of environmentalists who came to talk about saving some kind of turtle. Further down the row of chairs sat a family who was waiting for an escorted tour to the Capitol where they would visit the large speaking gallery where the big debating happens.
It. Was. All. Amazing. I believe that every citizen should lobby at least once in this life. It changes your perspective. It gives you hope that you can actually ask to have a teeny tiny portion of your taxes spent in a way that you are passionate about. It makes you realize that the process is slow, messy, and horribly large. The pace of change is glacial.
We went back in 2003. There were more families that year, and the year after that. And the year after that. I got to know many families from around the country. The MD care act was reauthorized by Congress. More members were signing on to letters that informed policy, were written into bills and became laws.
Tomorrow, I will travel to Washington along with more than 150 people from around the country. My elected officials from New Hampshire have changed many times since 2002. This is not a bad thing, as it allows me to educate more people about what living with muscular dystrophy is like. My meeting will take place early next week and this weekend I will meet a bunch of friends at the hotel where we will be trained on this year’s “asks” and work with those who are new to the patient advocate space.
You don’t have to live with muscular dystrophy to do this. If anyone wants to join me in 2026, come on down and see how our government works. It’s pretty cool to see.
Stay safe, stay awesome, and stay tuned.
Patrick moeschen 