Kids Speak Up 2013 by Emily and Susan Ramza

I was fortunate to attend Kids Speak Up, the Epilepsy Foundation Public Policy Institute in Washington, DC April 21-23. My mother joined me and I was one of 47 teens from around the country who came together to discuss ways to work to help improve the lives of the 2.2 million people with epilepsy in the United States.

Emily Ramza, James Townsend and Susan Ramza at the Capitol.

I enjoyed getting to know the other teens and hearing their stories – how epilepsy has affected 46 other lives and families. The conference started Sunday night with a dinner for only the kids. The parents and program representatives from the local affiliates got together to hear from neurologists on what work is being done for new and better treatment options.

Monday was a full day of learning about the issues and preparing for our meetings with Congress. We learned how to approach the people we would be talking to in Congress. We listened to speakers, spent more time talking with each other and getting to know each other, and practiced our presentations. Monday night there was a break from the hard work for a fun and exciting networking party for the teens.

Tuesday was the big day – time to go to Capitol Hill. My parents Brian and Susan, my younger brother Jack, and James Townsend from the Epilepsy Foundation of Missouri & Kansas all joined me to meet with staff in the offices of Kansas Rep.Kevin Yoder, Sen. Pat Roberts, and Sen. Jerry Moran.

During these three meetings, I told them what it is like living with epilepsy and the impact on not only me but on my whole family. I explained how the side effects of the medications have effected my focus and concentration and made school harder, how I have lost babysitting jobs, I can’t get my driver’s license, and that I am more nervous playing sports now since hyperventilation is one of my triggers. We discussed public service programs, research, and legislation being proposed to assist people with epilepsy.

Kids Speak Up was an amazing experience that I will always remember. Not only did it allow me to have a voice and explain to people what I live with everyday, but it helped me meet other teens who know exactly what I am going through. Epilepsy is a challenging disorder. At the end of the day, no one other than you really knows what you go through, and even though your family is there for you and is affected by it as well, they can’t totally understand how you feel. I was able to meet 46 other people who understand what I go through. I was able to give people with epilepsy a voice through this program, and I hope this is only one step to being able to help others. Maybe one day, through my voice, there may even be a cure because of the time I spent in DC.

My mom appreciated being able to talk with other parents who understand how frustrating it can be to fight for your children’s rights at school and how frightening it can be to give your children the freedom she needs.

None of us knew each other at the beginning of the three days, but by the end we were friends and exchanging cell phone numbers and emails. We all realized we have to keep fighting to make a difference. I hope to return next year to Kids Speak Up.

Emily is a junior at Pembroke Hill School in Kansas City, MO. Her mother Susan is a nurse.