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 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!
Senator Cardin, Mardia, and me