A few more things about summit….

 I can’t believe that a week ago today, we were prepping to head to Capitol Hill for a second day. It’s amazing how quickly time flies when you get back into your routine – we landed back in CA last Thursday at noon, and had a 4:30 baseball game and a 4:30 softball practice. And that’s how it goes – time goes by quickly.

But the hope created by working with advocates from all over the country is still in my heart, even if the cold of winter in DC has been replaced by sunny spring in So Cal. And there were a few remarkable things that happened that I still want to share….

When we visited our Representative last Wednesday, we also took along some “drop-off” packets to leave with Reps in other districts. Obviously, there were plenty of Reps that did not have a constituent visiting, and we wanted to pass our information along. So, we toook the packet to the office, and Caitlin asked if she could please speak to the Health or other Legislative Assistant. When we were visting the office of Howard “Buck” McKeon, Caitlin was in the office lobby telling the aids all about her arthritis, and what the bill does, and to please read the info etc. As she was speaking – an attractive business woman came out of a meeting in one of the offices. She patiently waited, listening to Caitlin before she tried to exit.

As we turned to leave the office, she came hurrying over to us. She was there on other business, but wanted to thank us. Because her 7 year old grandson has arthritis. I had goosebumps, and tears in my eyes as we talked briefly. He was diagnosed at 3 she said. Doing pretty well now, thank goodness. She was very happy to see what work we were doing and took one of Caitlin’s cards. Her grandson has already e-mailed, and we got to meet and share with yet another member of this crazy arthritis family. Small world indeed.

Prior to the sart of the Summit, Caitlin had the opportunity to speak at a luncheon of AF leaders. We pondered this and practiced a great deal. These are the men and women serving as presidents and CEO’s of chapters, and soon to be regions, all over the country. Prior to us walking in the room, I’m sure their agenda was filled with business – numbers, goals, sponsorships, strategies. It is, after all, a very serious job – and we certainly have great expectations. Caitlin spoke of her experience, and finished her short speech with a trio of “Together We Will”…. raise more money for kids to go to camp, have more doctors so kids don’t have to go state to state for care, and fund reserach for treatments and a cure. I hope, truly hope… that those leaders were inspired by my daughter and by the stories of advocates at summit, and by your story – in your life and your world.

Summit is over now – and I’ve just managed to finish the unpacking. But advocacy is all year long, just as arthritis is.

Best hopes to you all….

 

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