Alex Goes to Washington

Friday March 21, 2014

            We left from O’hare airport on Friday afternoon after a 1 hour 45 minute flight delay. We arrived in Washington D.C. around 5:45. This was followed by a new experience with the Metro train and the different blue and yellow lines we had to take. Thankfully Alnierys Venegas from EFGC and my dad became a team with understanding the maps. The train arrived a half a block from the hotel where a quick change of shoes and shirt and off we went to a National Epilepsy Walk VIP reception. We were greeted by Mr. Kurt Florian, President and CEO of EFGC. We met Lacy Viltko, National Program Manager and Art Therapist which is a great opportunity for me, EFGC E-Studio and art therapy program. I met Katie Swan, Peer Alliance Vice President for EFGC. Also, it was cool to meet Rick from Pawn Stars who also has epilepsy. We took a family picture with him. My family and I were only there for a short amount of time since our flight was late, but I enjoyed some food and meeting and seeing other EFGC friends, Jeff Moore and Dan Moore. We each left with an awesome one-of-a-kind cupcake and took cab ride to the hotel. At 10:45pm Friday night, a knock on our door brought a great tray of snacks to eat and drink. It was a great surprise from Bea, Brian and the Advocacy team of the National Epilepsy Foundation.



Saturday, March 22, 2014

            My family and I woke up and got dressed for the National Epilepsy Walk. My mom, dad, and sister put on white Epilepsy t-shirts, as I proudly put on my purple Epilepsy t-shirt. Wearing this purple shirt meant that I had Epilepsy. We met with Alnierys and Kurt down in the main lobby in order for us to all walk there together. On our way to Washington D.C., Alnierys brought little foam feet that we could make into necklaces. On these feet, we would recognize the individuals, families, and groups we were walking for. Today, we wore over 20 individual feet on our necks to show our support for them. I had feet representing all of my friends I met at Camp Blackhawk over the past two summers, some Wheaton North friends, and many others. The walk began near the Washington Monument. Once we walked out of our hotel, there was a large group of people with the Epilepsy shirts on, so we all decided to follow them. We soon realized, after about 4 blocks, that they were going to a nearby coffee shop, which was the opposite way we needed to go for the walk. Ooops. Once we realized this, we began to walk in the right direction. Once we got to the walk, there were hundreds and hundreds of people wearing white and purple surrounding a stage. Dodging mud puddles throughout the field, we made our way to the stage. There was a big welcome by Phil Gattone, National Epilepsy President and CEO, which started the event. Following the huge crowd, we began walking to the starting line. The announcer was announcing the different foundations and groups that were attending. As we crossed the starting line, the announcer stated “The Epilepsy Foundation of Greater Chicago.” Even though we were a smaller group, we yelled loud and proud for our foundation. The walk was really awesome! We walked past the Jefferson Memorial and other site seeing areas. All the women I was walking with including: my mom, sister, Katie and Alnierys made sure to take many pictures during the walk. One of my favorite pictures was an action shot of my sister, Sarah, and I jumping off a ledge onto the ground in front of the Jefferson Memorial. During the walk, a police man was standing in the street stopping traffic. He was waving to a little boy in front of me and asked him if he wanted a ride on his motorcycle. The little boy shook his head no. I immediately stepped in and told him that I would like to get on the bike. The seat was very comfortable and I felt like I was in charge of something important. Overall, the walk was an enjoyable time and the weather was perfect. It was a great time to bond with others dealing with epilepsy and create a powerful and lasting message as we walked around Washington D.C.

            After walking all morning, my family and I walked around the whole rest of the day around the museum part of D.C. We went to almost every museum throughout the day before dinner at 6:30. We went to the Lincoln Memorial, WWII Veteran Memorial, Vietnam Memorial, Natural History Museum, American History Museum, National Art Gallery, National Archives, and The Smithsonian. My favorite museum was the National Art Gallery. It was also awesome to see the Declaration of Independence and the Bill of Rights in the National Archives. We had to get a cab ride back to our hotel, because we could not walk anymore – our feet were too sore. After getting all dressed up, we went to dinner with our group of ten people from EFGC. The best part of my day today was definitely the National Epilepsy Walk. But the next coolest thing was seeing the White House at night after dinner. There were lights on the lawn and on the White House. The whole road was blocked off, so we were able to walk in the streets and take pictures. It was a great day in D.C.



Sunday, March 23, 2014

            From the eventful day yesterday, I think I fell asleep right as my head hit the pillow last night. I spent the morning with my family as we went to the National Holocaust museum. After learning a little about the Holocaust in school, it was interesting to see everything in exhibits and in pictures. Definitely a different experience than the other museums we went to yesterday. After the museum, my family and I went out to lunch. Tonight, there was the Welcome Reception for the Teen Speak Up Conference. My dad and I went together tonight. We listened to Phil Gattone speak about how proud he was about everyone being here. When he explained his story about his son having epilepsy, it was really powerful to me. It was important to me because I understood how much he cared about the foundation and raising awareness about epilepsy. Then ­­­Joyce Bender, a member of the National Epilepsy Foundation Board of Directors, spoke to us about how we can become advocates for ourselves and others with disabilities now and in the future. After these two presentations, the teens and adults separated. During dinner, I sat at a table with two girls and four boys from all around the country. It was interesting to talk to them about epilepsy and finding out how similar we all were in certain ways. We were then spoken to about specific events that would be happening on this upcoming Tuesday when we go to Capitol Hill to talk to our senators and representatives. We were told how to pose our authority of our purpose towards them. I am excited to go to Capitol Hill on Tuesday. Next, Mike, from the Harlem Wizards, told his story about his disabilities and his epilepsy. As a kid, he was not able to attend a basketball camp due to his epilepsy. Therefore, within the past few years, he has started many basketball camps for kids dealing with epilepsy. Mikes speech was about never giving up; staying as the strong individuals that we all are and never giving up on a dream that we have. It was inspirational to me because he did follow his dream, and I want to follow mine…which right now deals with art and being able to make a difference with those dealing with epileptic challenges and disabilities.  This first night of the convention was fun to meet other teens dealing with similar challenges. I am excited for these next two days of making new friends, making a difference and spreading awareness about epilepsy.