2/24/2012 11:33 AM
By Ken Woodhouse
Next week, I will be traveling to Washington, D.C.—along with other CHD advocates—to participate in my very first Congenital Heart Lobby Day on Thursday, March 1. This year’s theme is Celebrate and Motivate. The celebrating is important because of our recent successes, namely the passage and funding of the Congenital Heart Futures Act, which calls for increased research and increased surveillance for the CHD community. The motivating is equally, if not more, important, both for ourselves and for our members of Congress in order to keep this momentum going.
2011 was a great year for the CHD community, but we still have a long way to go. With the ongoing support and leadership of our Congressional champions—Congressman Gus Bilirakis, chair of the Congenital Heart Caucus in the House, and Senator Dick Durbin, who successfully supported the Congenital Heart Futures Act into law—I am hopeful that this is just the beginning of many more wins for the CHD community.
In the Ready, Set, Lobby… handbook that ACHA provided to Lobby Day participants, we are asked to draft and rehearse our own 30-second story that we plan to share with the representatives in Congress that we’ll be meeting. The story should include three important components: an introduction, our key message, and the specific request. So here goes:
“My name is Ken Woodhouse. I am from Chicago and am a 30+ year CHD survivor. I had my first (and, so far, only) open heart surgery at the age of eight months; to this day, I have lived a very healthy and active life with this defect. Unfortunately, however, I am in the minority; many CHD survivors have multiple complications and setbacks throughout their lives. Currently, there are not enough data available to ensure the long-term health and wellbeing of CHD patients. I am here to ask that you support the Congenital Heart Futures Act and consider joining the Congenital Heart Caucus. Thank you!”
Having never taken part in any formal lobbying activities before, I am especially exited about this opportunity. Not only will I have the chance to talk directly to lawmakers and their staff about something quite personal and about which I am very passionate, I look forward to meeting other advocates from across the country. Through my journey as a heart patient and my own blog, I have gotten to know some pretty amazing people; this will be the first time that I will meet some of them in person. Together, I know that we can make a difference!
I most certainly want to attend Lobby Day next week, but I also feel that it is necessary for me to do so. I fully understand that a lot of CHD patients are unable to attend for a variety of reasons; thus, it is even more important for those of us who can participate to go and make our voices heard. While it is impossible for us to relay everyone’s individual story during our brief meetings and elevator speeches, I trust that those of us who are there will represent the CHD community with the passion, professionalism, and persistence that we all deserve.
Although I think the following quote is sometimes a bit overused, it is still a pretty powerful statement that I will certainly be keeping in mind throughout my visit on Capitol Hill:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
To my fellow lobbying advocates, I will see you in DC! To the rest of the CHD community, wish us luck and stay tuned for the results. We will do our best to make you proud!
Ken Woodhouse was born in 1981 with tetralogy of Fallot and had his first (and, so far, only) open heart surgery at the age of eight months. He is an avid cyclist, having completed numerous multi-day rides, including the 7-day, 560-mile AIDS/LifeCycle ride from San Francisco to Los Angeles in 2010. Ken writes his own blog about living a healthy and active life with CHD.