Teen Advocacy Day has been an incredible event in my life. I first attended when I was 13 years old, eventually going to Washington, D.C., a total of five times to advocate for people living with cystic fibrosis. My experience was the main inspiration for my decision to major in political science, participate in March on the Hill (the “adult” version of Teen Advocacy Day), and intern for the Cystic Fibrosis Foundation.
It's always inspiring to see all the new and old faces come back to Washington, D.C., to fight for their loved ones with CF. I leave with a renewed sense of hope for the future of our community, and an immense amount of pride knowing that what I and all of you did had such an impact on the lives of those with CF. But I didn't always feel that way.
As a teenager, I was cynical. I didn't think that a group of teenagers sharing their stories about CF could really affect legislation in a tangible way. I now realize how amazing Teen Advocacy Day is for myself and, more importantly, the CF community. In hindsight, this event helped me grow into the person I am today.
I can tell you with absolute certainty that our advocacy on behalf of people with CF truly matters. I've found that although members of Congress are intelligent and compassionate, they tend to be unaware of what people with CF go through on a daily basis and how it affects every part of their lives. By sharing our stories, showing them pictures, and describing our loved ones' lives, we put a face to the disease and, just as importantly, help members of Congress understand the impact of the decisions they make when voting on legislation.
This impact will never be more important than it was at this year's Teen Advocacy Day. June 22 was the day that the Senate released the Better Care Reconciliation Act, its version of a bill to reform the American health care system. It also was the day that the CF Foundation had 81 teenagers and 162 volunteers storm the Hill to sit in 275 meetings with members of Congress.
The Foundation, along with many other patient organizations, vocally opposed the Senate bill. If it were to pass, it would not protect our loved ones adequately and would derail so much of the progress that has been made toward adding tomorrows to those affected with CF. Being on the Hill and advocating against such potentially disastrous legislation provided a firsthand view into how Teen Advocacy Day and our community can make real waves in the policy world.
To me, influencing policy is what Teen Advocacy Day is all about. The event is much more than simply spending a few days in Washington; it's an opportunity for a group of smart, driven, mature, and unique individuals to rally around a shared cause and create a real, tangible difference in people's lives.
I'll be the first to admit that, like many teenagers, I was a know-it-all when I started participating in Teen Advocacy Day. Though I always did my best to deliver our important message to my members of Congress, I definitely had my doubts about whether what we were doing actually mattered.
When I hear from people who express similar doubts, I like to share the conversations I've had with people such as Rep. Brian Fitzpatrick (R-Pa.), whom I spoke to about the impact of advocacy during this year's event. I can tell you, both from his and my own experiences, that it is important to share your CF story and let your elected leaders know what people with CF need to live full, happy lives.
If you have any reservations about jumping in and becoming an advocate for people with CF, please don't wait another day to get involved. Take it from someone who was once in your shoes: Your voice is immeasurably powerful. The CF community needs it now more than ever.