We got back from Washington DC yesterday afternoon and had the most wonderful time. We were there celebrating the Genetic Alliance 20th anniversary. We arrived in DC at 4:00 on Tuesday afternoon. Donna and her daughter Ashley met us there. We then all took a cab to our hotel. We were four of 15 people representing HPS. That evening we all met at a Chinese restaraunt, and Donna discussed with us what we would be doing the next day at the Capitol. Wednesday morning, we walked to the metro, boy what an experience that was, people in DC are very much on the move. Nothing slows them down. This was our first time riding the metro and it was extremely packed that morning. Then we got off and walked to the Raburn building we were participating in Genetics Day on the Hill. It was there we were served a wonderful brunch. After we ate we were put into groups depending on which state you were from. Our group consisted of, the two us and our parents, with an other lady from Alabama. Our leader was Andrea, and she was awesome! She briefed us on the protocol and the two bills we would be lobbying for. We went around to six different State Representative’s offices and presented our two bills which pertained to Genetics. It was quite interesting getting to talk to the different representatives for these offices. They were very nice and accepted our presentation well. When we finished we went back and gave an account of our meetings. Then out to the capitol grounds to have a group picture done. Back to metro to get back to our hotel, and this time we actually got to sit down. That was nice We had a couple of hours to rest and prepare for the Gala evening at the Smithsonian in the NationalGeographic Building. You should have seen us trying to hail cabs, it seemed like none were available. We were split into groups of five and needed three cabs. Cab drivers are quite intersting in DC.You gotta hang on for dear life. Our cab had most of us young people in it and we were dropped off at the wrong location and had to walk about a block to the Smithsonian in heels and dress clothes, but we made it. When we entered we got a surprise that Donna had arranged for Katy and her parents to drive from VA. We were thrilled beyond belief. The three of us had a wonderful time together. Candice and I were being honored for our fund raising and spreading the message about HPS. We felt so blessed to be able to meet so many wonderful people. One of the highlights of the evening was meeting Dr. Francis Collins again. He is the Doctor that mapped the gene. We met him for the first time back in 2001 when we sang at the Smithsonian Museum of Natural History celebrating the mapping of the gene. What a wondeful person he is. He even included Candice and I in a song that he wrote talking about all the good people that pertains to genetics. Thank you Dr, Collins. We were so amazed to see our picture hanging with other leaders representing their syndromes and diseases, and other Genetic Alliance people. Donna Appell our founder of HPS Network treated us as if we were royal queens. Thank you so much Donna, we love you. The evening went by so quickly and we were sad to have it come to an end. We enjoyed it so much and will never ever forget this wonderful experience. We arrived home yesterday afternoon and today it’s back to medical isssues. Candice went for an untrasound this morning and the tumor is still there. We have an appointment with the Mayo clinic in Scottsdale Arizona on Monday afternoon with a cancer specialist. Please continue to pray for us. We know God is in full control and he will take care of us. Check out this link, this is why we were in Washington. Love to you all. Click on a picture to enlarge.
We finally got it cleaned up though it took a long time. We will be flying out Tuesday AM 09/26/06. We will be attending the Genetic Alliance Gala at the National Geographic Building at the Smithsonian Museum. We are also going to Lobby at the Capital for funds for research for HPS. We are looking forward to our trip and seeing some of our HPS friends again.