Mark and I had the opportunity to travel to Washington, D.C., yesterday to lobby on the Capitol for rare disease research legislation. We went as part of the group "Rare Disease Legislative Advocates" and had four meetings throughout the day. We were nervous and excited all at once, and certainly felt like "fish out of water", but we will do anything to fight for our children and try to give them every hope for their futures.
Our first meeting was with a staffer from Rep. Henry Waxman's office. We were invited along with the lobby day's coordinator, Julia, as the meeting had been set by an MPS family from California. That family couldn't attend, so Julia wanted another MPS family to join to put a personal story to the need for the legislation. Well, Rep. Waxman isn't a fan of the bill for reasons that I won't get into detail about here (party politics has something to do with it), so his staff member was polite, but not interested. It's hard to hear someone say "I'm sorry for your situation..." and know that at the end of the day, they don't care. We're one family of millions, I know, and there are many stories and many needs, but it doesn't make it any easier.
Our next two meetings were with staff members from Sen. Carl Levin and Sen. Debbie Stabenow's offices. Sen. Levin's staffer was polite, but didn't have much background in healthcare. He did listen to our story, took our information and said that he would look further into it. The bill is still in the house at this point, but we at least wanted to to push for support of any rare disease legislation. Our meeting with Sen. Stabenow's staffer was warmer. She was very friendly, very interested in our stories, took lots of notes and promised to do what she could. Senator Stabenow is interested in matters of healthcare, so that's a good thing.
Our last meeting was to be with Rep. Bill Huizenga, from our own district. Rep. Huizenga actually graduated two years ahead of Mark at his high school and Huizenga knows Mark's family. We were hoping the personal connection would be to our advantage. We arrived at his office for the meeting to find the gentleman working the front desk was a Hudsonville High School grad (where Mark teaches!). Another nice connection from home. Another staffer told us that Rep. Huizenga (can I just call him Bill for our purposes here??) was actually on the House floor voting, so our meeting would be there. He walked us over to the Capitol Building and then to the hallway right outside of the chambers. Bill came out and greeted us, was very friendly, very interested in our story and the legislation, but didn't recognize Mark yet (it's been many years). The connection finally came out in conversation and from that moment on the visit became so much more personal. He listened intently, was saddened by our story, took all of our information, told his staffer to check into somethings to follow up and then took us on a personal tour of the Capitol. He showed us the room containing many of the statues that each state has there, told us historical stories about the rooms, explained paintings and then took us out on the balcony overlooking the National Mall for a photo. What a fantastic gentleman. He stayed with us so long that he was fifteen minutes late for his next meeting.
So, our day ended on a good note. We met some really nice people from all over the country, including three women from the Detroit area, and we felt like we were able to do something proactive. I'll admit that it was overwhelming at times and the road ahead for this piece of legislation is daunting. It's amazing how there is politics in everything. My party doesn't like your party...my organization doesn't like your organization...blah, blah, blah. And here we sit, as parents of children with a rare disease, who would just love for people to work together and GET SOMETHING DONE!! There are so many hoops to jump through, but we'll keep pushing