YPWC Correspondents Report from Capitol Hill

By Heather Frese & Rebecca Moore

Originally published in Youth Allied By CFIDS, Summer 1997

Recently the undercover investigating firm known only as "H & R Endeavors" infiltrated the Washington, D.C. training session of The CFIDS Association of America's Lobby Day in heavy disguise. Our chosen mission? To see just what kids and parents thought about the whole deal. (Okay, so we were there lobbying, too, and so can you in '98 - see page 16.) Using funky-cool gadgets like zoom-lens cameras and tiny tape recorders, H & R Endeavors was able to capture live the thoughts, feelings and emotions running amuck on Capitol Hill May 15, 1997. Here is a briefing on what we uncovered, transmitted to you with the help of our stealthy team of YPWCs…

Heather Frese
(YPWC, age 22; sick since age 10):
I never thought I liked politics, but the Lobby Day experience changed my mind - I felt excited, empowered and energized when I spoke to our legislators. And, just as importantly, I met a lot of cool people and had fun; it's pretty amazing to hear a senator's name on CNN and be able to yell, "I've been in his office!"

Rebecca Moore
(YPWC, age 20; sick since age 14):
Lobby Week was going to be my Grand Adventure away from home. I looked forward to it all spring! But once I arrived in D.C. and got down to work, it felt even more exciting and important that I was in a place where so much was happening. We were surrounded by opportunities to make a difference… we had to pick and choose our activities carefully. It was a thrill to be a teeny, tiny part of the action.

Kamilah Neal
(YPWC, age 20; sick since age 14):
CFIDS Lobby Day gave me the chance to meet other young people with CFIDS for the first time and to speak openly about my six years of CFIDS experiences. I now feel that I can more accurately and articulately present a picture of life with CFIDS to others. After such a positive experience, I am eagerly awaiting Youth Lobby Day next year.

Wilhelmina Jenkins
(Kamilah's mom and a PWC):
Coming together with such a large group of advocates to bring information about CFIDS to Congress was an exciting and empowering experience. I would encourage all PWCs to become more involved in advocacy and to participate in future Lobby Days. We can make sure that our government understands our struggle and supports the effort to better understand, treat and eventually cure CFIDS.

Clare Newbrand
(mother of YPWC Alexis, age 20; sick since age 16):
I can tell you that I found the experience very empowering. There is so much about this illness which makes PWCs and their families feel helpless - like powerless victims of a cruel fate. When you are doing something positive - as simple as writing letters or as exciting as walking around Capitol Hill - it gives back some feeling of control, of being able to contribute and perhaps having some influence on your or your child's future. It was my pleasure - I was honored to be part of Lobby Day and to represent my own child and other YPWCs.