Monday, March 26, 2012

Visiting Capitol Hill (again)

I hope you weren't silly enough to think that I'd stop working with NPF (or running, kinda) once the Challenge "ended", were you?!  That was just the beginning!  As far as I'm concerned, my mom is still struggling with this disease and it's still taking her freedom and causing a lot of frustration, so why would my work be done?  And the more involved I've gotten with NPF, the more I've realized she's far from the only one. 

The answer, clearly, is I won't.  Sure, I'll run less, but I'll never stop fighting.  I want to see my mom smiling and walking without a cane.  I know a cure is going to take awhile and I'm very realistic, but I also know that we won't get there without funding the research and the organizations that are needed so that we can get better medicines, and then one day, maybe even a cure. 

 I was lucky enough to meet Congressman Moran.  You may remember I wrote about him last year when he ran Dash4Dad!

So that is why I couldn't have been more excited when NPF asked me if I wanted to be involved in another Capitol Hill event.  I checked my calendar, made sure I could get the time off from work, and then happily said yes.  It was a much different format than the larger Capitol Hill Day I did back in June.  This event was originally just for some of the great scientists who are working to fight this disease.  This year, they decided to change it up a bit and bring one advocate from each region of the country (with the exception of our region, which had 2).  Though the scientists weren't in every meeting, ours was a great group which included someone from NPF, the organization which handles the political involvement for NPF, two advocates, and a scientist.  The other advocate has a daughter who has psoriasis and stiff joints, and the effects of the medicine (which will hopefully slow/prevent serious psoriatic arthritis) have caused her to miss almost two full years of school.  It's horrible and serves to remind me why I'm out there.

 Congressman Doyle, our group, and the CEO of NPF

It was a busy few days!  We had a working dinner the first night where we all met each other and then went over what we would discuss and would need to be prepared for the next day.  Though some had never advocated on Capitol Hill, a lot of us had been there before.  The next day we met with seven different congressional offices to share our stories. 
It was SO successful!  We had a lot of congressional aids who listened to our stories, asked questions, and said they would pass along what they had learned.  We were also lucky enough to get to see Congressman Moran, and we had two meetings where the congressman was in the entire meeting to hear our stories and talk to us.  Congressman Doyle, who supports our bill, sat and talked with us, along with the CEO of NPF. 

We also met with Congressman Altmire, who said that he was so touched by our stories that he agreed to sign the bill.  Can you believe that?  That is truly what advocacy is all about.  After we left, some members of our group were teary eyed, realizing how important this was.  It took a lot of strength for my mom to let me share her story so publicly.  It's deeply personal, and involves a lot of frustration.  But this was the reward we needed, when we realized that by telling her struggles we could hopefully change the future for others.  That is why I loved the event, and that is why I won't stop advocating.  Once you hear what my mom's been through, it's hard not to want to get involved.

Congressman Altmire, who was so touched by our stories he agreed to sign our bill!

Afterward everyone had a little downtime at the hotel, but since I wasn't staying there I just hung out in the lobby.  I saw one group who was going to grab drinks nearby, so I joined them for a bit.  Great to spend time with such wonderful people!  Then we went to a great dinner where we socialized and heard more about the scientists and their work.  I metroed home, exhausted but unable to stop smiling.  I called my mom and told her the good news - we are making a difference.  I felt hope, and I felt ready to keep going.

Senator Cardin, Mardia, and me

The next day I was paired with a different team, and I had one meeting with Senator Cardin's office.  We saw him walking in as we were waiting for our meeting, and he kindly took a picture with us and welcomed us.  Another great experience!  After our meeting, I rushed back to the bus to head to NIH, where we heard presentations from the researchers, visited two labs, saw the lab that does genetic sequencing, and discussed how they were working to fight the disease.  Some scientists are looking at the disease from the inside (focusing on the genes) and others are focusing on the outside (the skin).  Admittedly, I understood very little of what they said since I'm not a science person, but I still found this one of the best parts of the day.  They answered questions and patiently tried to explain complicated medical info in understandable terms, talked about what they thought would lead to the biggest breakthroughs, and overall just made us see how important their research is.  Sadly, the day came to a close and it was time to head home, but this was an awesome event and one I won't forget anytime soon.  Thanks NPF for continuing to include me, and I look forward to continuing to advocate in the future!

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