When I started in advocacy, it was shortly after Nicholas was born with a severe heart defect. I had felt blindsided by our experience and wanted to make a difference. Then I was invited to Washington, D.C., to tell my story.
What an addicting experience.
To think that I was in the nation’s Capitol—talking to someone who can change things, make them better. To think that my story could help.
I have to admit, at first I was a bit unsure whether or not my story really mattered. There was no flash of lighting, clash of thunder, new law from out of nowhere.
That has changed! In the last few years, the collective stories from people like you and I have made a difference.
In fact, the best example we have of that right now is the Congressional Congenital Heart Caucus. The Adult Congenital Heart Association is the only organization actively recruiting Member of Congress to join the Caucus, so it is safe to say, all progress in this area is from YOUR efforts.
In Florida, one advocate and her colleague contacted nearly every representative in Florida, asking them to join the Caucus, resulting in four new additions in one week!
In California, several advocates made repeated contacts with Congressman Adam Schiff. One advocate was even able to meet him in person and share her story. Turns out he had a story, too. By connecting these stories, he readily agreed to co-chair the Caucus.
Keep in mind, I had been talking to his office for nine months, trying to convince him to join, much less co-chair! Clearly, I had nothing to do with this. It is YOU—your personal story—that is making a difference.
Given all the recent flutter of excitement, I reminded my Congressman to join. I am proud to say, that the most recent addition to the Caucus was from my district!
It takes a little bit of work, a little bit of effort. But telling your story does make a difference, more than ever. Together we will change the world for those living with CHD!
For more information about the Congressional Congenital Heart Caucus, please visit this ACHA webpage.
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