Hi Everyone,
I have just returned from a very successful trip to Washington D.C. Every year our National office provides an opportunity for children with epilepsy and their parents to visit the nation’s capital, meet with their legislators, and tell their personal stories. Kids Speak Up! is part of the Public Policy Institute. Children are selected by the Foundation to take part in the program.
This year I attended with one of our campers and her mom. We flew out last Tuesday and got started Wednesday morning. We were all really feeling the time difference but I got lucky since my portion of the program didn’t begin until 8:45am California time. Our KSU family had to start at 5am California time!!! Wednesday was full of meetings about ongoing and upcoming research, giving us advice for our Hill visits, and talking about the different funding asks we were to make.
Increased funding was requested for CDC programs, research, and education, and for increased access to medications, and doctors. On Thursday we had four meetings. In addition to myself, our camper, and her mom, one of our very best volunteers and his wife accompanied us and the five of us made quite a team!
Our first was supposed to be with Representative Mike Honda but he was called away for Health Reform reasons. We met with one of his staffers in the hallway and she was very interested in what we had to say, especially our camper’s story! We had other meetings with staff of Barbara Boxer, Diane Feinstein, and Representative Jerry McNerney. Everyone was very receptive. At one of our meetings we were given passes to the House and Senate Galleries.
We set off to the Senate Gallery where we had just missed voting on Health Reform. There were still some members present and it was a great experience to observe the room that is constantly on C-SPAN.
Next we caught the end of a Hill Briefing given by the Epilepsy Foundation. It was open to everyone attending the conference as well as all Hill staffers. Greg Grunberg, of the NBC show “Heroes” was in attendance with his family. His son Jake has epilepsy. When it was over we met Greg and it was great! Our camper was elated as she is a huge fan and also around the same age as Jake.
The day flew by and after returning to the hotel we put our feet up; we did A LOT of walking!!! It is so exciting to be in the Nation’s Capital advocating for people with epilepsy.
Until next time!
Stephanie Eistetter, Manager of Programs and Services