16th annual HPS conference in NY Crystal
Our trip to NY was an enjoyable one. It was so great seeing our HPS friends and meeting new faces. We left last Thursday night at 10:30 and flew overnight. We arrived in NY a little before 6AM Friday morning. We flew JetBlue for the first time and really liked it. Our flight was very smooth, though we didn't get a lot of sleep because it was noisy. We arrived at the Marriott hotel by seven and our room was ready for us which worked out very nicely. It snowed Friday morning and it was so beautiful. Here in Phoenix we don't get that kind of weather, so it was really exciting to see the snow fall. The conference didn't start until Friday evening so we spent the morning resting. We attended a couple of sessions that evening and had dinner with the HPS young adults. We always enjoy our special time to visit with each other. After a continental breakfast Saturday morning the sessions began. Candice and I start each conference with our theme song "Colors of the Wind." We feel honored to start off the meetings with this special song. When we were 15 years old the two of us along with Donna's daughter Ashley opened the protocol for HPS. During the week we were at NIH, we had an opportunity to sing "Colors of the Wind" for Dr. Gahl, our head research doctor, and a panel of other doctors. In the second verse it says "but if you walk the footsteps of a stranger, you'll learn things you never knew you never knew." It is that phrase that has made this song so special to us. If these doctors didn't walk in our footsteps, they wouldn't know our needs for HPS research. HPS is a strange disease and we are learning new things about it all the time. On Saturday morning we allow a couple of hours for the Family Album. Everyone gathers in a circle and introduces themselves. The past two years we have really grown and the circle has become even bigger. It's enjoyable to see our old friends and meet the new families. Candice and I belong to an HPS listserv and one of the highligts of the trip was to meet the new people who we've been corresponding with through the list. We also met a family that adopted two girls from Hyderabad, India. The older girl is twelve and has HPS. It was really awesome getting to know both girls. Saturday afternoon after lunch Candice and I attended Coping with HPS adult session moderated by Carmen Camacho. She asked each of us to introduce ourselves and pick a color that best represents us. I picked the color green, it's positive, uplifting, bright and it means go, go, go. It's also my favorite color too. Candice picked fluorescent pink because it's bright and it stands for survival. She's been through so much with battling cancer as well as the HPS related issues. I thought this was a great exercise, and made us really think. Later that afternoon we went to a session about Women's Heath with Dr. Melissa Merideth. Dr. Merideth is a GYN at the NIH. She put together a slide presentation of a survey she took about women with HPS. It was really interesting and very informative.
Saturday evening was the big dinner. This years theme was "Superheros." Donna was very creative this year with it. The theme was dedicated to all of the doctors at the NIH for all their hard work and dedication to us. To our amazement Superman, Spiderman and Batman showed up haha!!! Be sure to check out the pictures under the photo section. We had such a wonderful dinner and our visit with Kelly and Nicole was so much fun!
Ashley, Donna's daughter, Candice and I sang "Hero" by Mariah Carey. It's a beautiful song and it fit the theme perfectly. Candice and I also sang "Wind Beneath My Wings" and dedicated it to Donna, the doctors at NIH, as well as the volunteers who give their time to help us and the network. We can't begin to imagine the number of hours spent trying to make this conference a success. Both songs went well and we truly enjoyed the opportunity to sing once again.
Sunday morning Candice and I were asked to join a panel with three other people for a session called "Lessons Learned." We each discussed experiences we have had to deal with having HPS. Candice and I shared a funny story that happened to us in high school. We'll share this story in a futue post.
Sunday focused on the doctor's presentations by Dr. William Gahl, Dr. Thomas Markello, Dr. Bernadette Gochuico, Dr Lisa Young, and Dr. Samuel Seward. We also heard from Janet Perez and Dr. Keith Meyer about the success of Janet's lung transplant last year. Janet's story was such an inspiration to all of us.
At the closing of the conference, Donna asked us to sing "Colors of the Wind" as well as "Hero," while a picture presentaion was being showed. We ended the conference with "When You Believe," which is a powerful song about believing in miracles. It's amazing to see the miracles God has done in our lives. The weekend flew by very quickly and we were sad to see it end. We had a wonderful time and we look forward to seeing everyone at the conference next year.
