On Friday, April 15, Hugh O’Donnell, a 16 year old living with epilepsy, along with his family and two EFGC case managers, headed out to Washington DC, to attend Teens Speak Up!, an annual conference held by the national Epilepsy Foundation. Every year this conference brings together over 150 advocates, including Epilepsy Foundation affiliate staff, parents, teens, doctors and volunteers from across the nation, to advocate on behalf of the epilepsy community. Through this initiative, we are able to strengthen our advocacy network, share updates on the state of epilepsy research & funding as well as give families an opportunity to speak with Congress and share their stories of living with epilepsy.
Check out a video about Teens Speak Up and Hugh here.
Check out pictures of their trip in Washington, DC here.
Hugh has also written a blog to share his experiences with us…
Today we woke up and took the metro straight to the walk. I was so surprised to see how many people were there, it makes me so happy to see how many supporters there is out there. Then after the walk we stopped to see the WWII memorial an then went on to walk around the reflection pool and down to the Lincoln memorial. By then we had already walked a lot and it was only about 11:30 am so we decided to take a much needed lunch break. After lunch we went on to the holocaust museum, which was something that I really wanted to see. The museum its self was my favorite part of the day. We spent about 3 hours there and it was amazing, it will always be a place I will remember. Our last stop of the today was the Arlington national cemetery. It was very moving to see all the people we had fought and died for our country. We got to witness the ceremonial changing of the guards at the tomb of the unknown soldier, which was pretty cool. For my first full day in in D.C it was pretty amazing. I am so excited and cant wait for what tomorrow will bring.
It was beautiful outside today. The first thing we did was go on a bike tour downtown at noon. It was fun to bike around the city and see different parts of the city i hadn’t seen before like the FDR Memorial and the new Martin Luther King Jr. Memorial. Then I had to head back to the hotel to get ready for our first Teens Speak Up session. Our first session was mostly just about getting to meet the other kids and learn their stories. I ended they day by hanging out with some of the TSU kids down on the third floor by the pool and the gym.
Today we met everybody extra early for breakfast at 7:15. It was nice to spend time with the TSU kids for one last time before went to our separate meetings with our own legislators. My first meeting was at 11:00 so I had some time to prepare in the morning. We left the hotel and took the Metro to Capitol Hill at about10:00. Our first meeting was with the aid of Congressman Dan Lipinsk, Sofyai. Then we went and stood out in front of the capitol building with all the TSU parents, teens, and staff for a picture. Our next meeting was with Senator Mark Kirk. Followed by a meeting with the aid of Senator Dick Durbin. All of the meetings went well and I got to tell my story. Our last meeting pretty much concluded our trip to D.C. We had our flight at 7:30and got back home around 9:00.
The whole trip was amazing and way more than I could have asked for. It was great to connect to other kids who have similar situations with their epilepsy. I learned a lot about how to be an advocate for myself and others. I liked every part of the trip. I am so glad that I got sent out to D.C with Casey and Maria because they are both two wonderful people and I just want to say a special thanks to the Epilepsy Foundation of Greater Chicago for giving me this opportunity.
Want to thank Phil and Bill too. You guys are awesome. Thank you for all you taught me.