Arthritis Advocacy Summit in Washington D.C.

Last week we were fortunate enough to get to go to Washington D.C. to the Arthritis Advocacy Summit. Several weeks ago someone from the Arthritis Foundation contacted us about applying for a $1,500 stipend to go to the Summit. We talked about it and decided that we wanted to try to do it. We got the stipend which paid for almost all of our trip--flights for Kris, Hannah, and I as well as hotel for 2 of the 3 nights and the registration for the Summit. We decided to leave Lincoln with my parents. We weren't quite sure he was up to this kind of trip! Layton, of course, had to come because we are kind of attached.

We didn't tell Hannah for several weeks that we were going because we didn't want Lincoln to be upset that he wasn't going. One day we were in the car and Hannah randomly asked when she would get to ride in an airplane. I couldn't pass up the opportunity so I said, "Well, actually you will get to ride in an airplane in just a couple of weeks because we are going to Washington D.C." She was SO excited. Her class at school had talked alot about George Washington and Abraham Lincoln around President's Day and so her teacher was excited for her to get to see the Washington Monument and the Lincoln Memorial. She told her to make sure and take her picture at those places. We finally told Lincoln about our trip and really played up the fact that he was going to get to go to Mimi and Pappaw's house for several days. He was excited about this and so we didn't have much trouble leaving him. He had a blast with them!

So, we got up early Monday morning and my dad took us to the airport. Hannah was so excited about the plane ride!

We were a little nervous about how Layton would do though. He had just gotten over an ear infection.

About to take off...

In the air! She loved it! What a fortunate girl she is. I didn't ride on an airplane for the first time until I was a senior in high school! Ha!

It didn't take long before these two were out. I mean, it was almost immediately!

Hannah entertained herself on the plane by drawing and writing. She started a book that she worked on throughout the whole trip. She is quite the little author. I plan to do a post about that soon. :-)

He was an absolute angel on all the flights. Slept straight through almost all four of them.

We finally got to the hotel--The Crystal Gateway Marriott. In his goofy way, Kris made the comment to the lady at the front desk about them holding the best room in the place for us. Well, she saw us with the two kids and decided to upgrade our regular king room to a suite! It was awesome!!! It had a bedroom and living room with huge tvs in both rooms. The couch made into a bed and they brought us up a pack-n-play for Layton. We slept great the whole time and had lots of room to spread out.

The cool thing about our hotel was that it connected to the Metro as well as these shops that were underground. So, we ate a late lunch at one of the restaurants there called Hamlet. That evening we went to a JA Alliance: Research Update meeting. We learned about new research with Juvenile Arthritis and saw some of the other families that were there for the Summit as well.

Also, that evening we went to the Kids' Summit Parent Orientation. While we were going to different meetings during the Summit, Hannah and all the other 80 kids that were there, also had their own Summit. They did fun and educational activities designed to help them learn about government and how to advocate themselves. They did all kinds of crafts and fun things, but also learned some things too. I was a little nervous about how she would be with us leaving her in a room with a bunch of people she didn't know. However, she did just great! I, personally, think she is one brave little girl. She jumped right in and participated. She loved it and looked forward to going to it each time!

Here she is the first time. I think they were decorating cookies.

We went to New Advocate Training that night. It covered important information about the political and legislative processes. The whole reason we were there was to go talk to our Members of Congress from Arkansas about arthritis. The Arthritis Foundation had several things that they wanted us to ask of the members. We were going to be trained on this as well.

That night we had to go swimming. However, the pool was freezing, so we got in the hot tub. It wasn't that hot for some reason. The kids enjoyed this!

The next day while Hannah was at Kids' Summit, we listened to some speakers. We heard from the President and CEO of the Arthritis Foundation, someone from the National Institute of Health (NIH), and a director at the Food and Drug Administration (FDA). We also were informed by the Arthritis Foundation staff on how to conduct successful meetings with our Senators, Representatives, and their staff.

By they way, there were people from 47 states represented here. This was really neat! We were the only ones from Arkansas.

That afternoon we headed to our meetings with our Senators. Here is Kris and Hannah about to board the Metro for the first time.

Layton was amazing on this trip. He was so good. We bought a jogging stroller for the trip and it worked great! He was able to sleep in it when he needed to nap and it was so easy to push around.

On our way to meet with Senator Bozeman and Senator Pryor.

After we got off the Metro, we had to walk to the Senate Office buildings. We passed the Capitol on our way.

This was inside the Senate Office Building. All these doors were for different Senators and maybe some other offices as well.

Our first meeting was with Senator Bozeman. Since he just got elected, he wasn't in his real office yet. He was just in a temporary place right now. He wasn't available when we got there, so we had to talk to one of his Legislative Assistants. We had been informed that this was not a bad thing. These guys have quite a bit of power as well. Kris did most of the talking during the meeting. This kind of thing is way out of my comfort zone, I have to admit. He started off by telling why we were there--our story about Hannah. Of course, it is kind of a tear jerker and he had to fight back some tears (which if you know Kris, was kind of hard to do. :-) Then, he talked about the things that the Arthritis Foundation wanted us to talk about. One of these things was to ask the Senator to join the Congressional Arthritis Caucus.

The staff guy listened well and was very very nice. He wanted Hannah to sit in Senator Bozeman's office chair to take her picture, but she was feeling shy at the time and wouldn't do it. Kris and Layton did though.

As we were leaving, Senator Bozeman came in! Yay! He was very nice. He asked what he could do for us and Kris quickly told him a few things. We posed for a picture and that was that. I thought Kris did a FANTASTIC job during this whole thing!

Next, we headed over to Senator Pryor office. His office was much nicer since he has been there for much longer. Here is Layton and I waiting for our meeting. Hannah took this picture.

She took this one too. This is Arthur B. Better. They made him at the Kids' Summit. He is filled with rice and if you heat him up in the microwave for 2 minutes, he is "heat to the rescue." They got this cute little story about him that was written by a girl with arthritis, who is an awesome advocate for this disease. Hannah loved this thing and carried it around to all the meetings.

We started talking to Senator Pryor's staff person and a few minutes later, he came in. We had to back-track a little and fill him in. He asked a lot of questions. He is on the Appropriations Committee and is, therefore, an important person to talk to. We had the Associate Director for Advocacy from the Foundation in there with us. We think she was there because she knew how important Senator Pryor could be.

After our meetings, we went back to the hotel for a nice dinner. Hannah was so cute. She wanted to sit with one of her new friends. She didn't even eat dinner at our table that night. :)

George Washington came to visit that night (He is the mascot for the Washington Nationals Baseball team). The kids liked this.

We were fortunate to have our appointment with Representative Tim Griffin Wednesday morning. This allowed us the rest of the day to sight see. He had meetings going on and so we met with him in a hallway! This is not unusual at these things though. These guys are busy people. We were warned of this. However, he was super nice. Our visit with him was the quickest, but it seemed the most successful of them all. He indicated to his staff guy who was there taking notes, that they should join the caucus. His staff guy was really nice and supportive, telling us that his mom has MS and arthritis.

One of Representative Griffin's staffers set us up with a tour of the Capitol. The Capitol building is connected to all the House and Senate offices underground. We got to walk this way to get to the Capitol. The Capitol tour was neat. It is a beautiful building inside and out.

This was one of the paintings hanging in the Rotunda. It is of General George Washington Resigning his Commission.

The Apotheosis of Washington in the eye of the Rotunda.

One of the many statutes in the Rotunda--President Ronald Reagan.

Abraham Lincoln

We got to go into the House of Representatives and watch them vote! We couldn't take any pictures in here. We watched them debating and then they had 15 minutes to get in and vote. It was interesting to see all 400 something of them all trickle in and the room fill up.

After our Capitol tour, we walked to see the Washington Monument. It is huge!

This picture was taken standing close to it and looking up at it.

Looking back at the Capitol. We did A LOT of walking that day! The kids were such troopers!

Hannah was sitting on a bench at the Washington Monument. You can see the Reflecting Pool (which was being cleaned) and the Lincoln Memorial in the background.

The White House. We never made it over to it. We were just too tired after walking all that we did.

World War II Memorial

Us at the Lincoln Memorial.

The Gettysburg Address!

The Lincoln Memorial. This was so impressive!

Looking at the Washington Monument from the Lincoln Memorial.

The Vietnam Memorial. This was amazing. Unbelievable how many names.

Another view of the Capitol. We didn't have time to do any of the Museums. Hopefully we will go back again and see them!

We had such an amazing trip. It was so good for us in many ways. It was an eye opener. We are SO blessed that Hannah is in remission from her arthritis. We met many people who have kids with this disease who are not as fortunate and are in the midst of fighting this disease. We met one family from Alabama who has 2 kids ages 6 and 4 who were both diagnosed within the last year. The little 4 year old girl has it all over her body. She gets injections in her back and her jaw and takes all kinds of medications. It just breaks your heart to hear some of the stories.

This trip was so informative. I did not realize that arthritis is our nation's leading cause of disability! This results in an annual $128 BILLION price tag from direct (medical) and indirect (lost earnings) costs.

50 million Americans have arthritis now and that number is expected to climb to 67 million within 20 years.

Over 300,000 children have arthritis. Our Hannah is one of them!

This disease affects SO many!!!

I am so thankful we went on this trip. What a great experience for all of us. Kris wants to become an Arthritis Ambassador. Hopefully we can go again next year.

I can't end this post without telling about Lincoln's trip to Mimi and Pappaw's. Mimi took some pictures and made a little book for him of some of the things he did while he was there. I know he rode the 4 wheeler and did some things with Pappaw too.

Thank you so much, Mom and Dad, for watching Lincoln for us!